I was born with a condition called Osteogenesis Imperfecta, which causes my bones to break very easily. Doctors told my parents that I would never be able to play like a normal kid and that I would have to be carried around on a pillow. Basically, I had to be bubble-wrapped my whole life. I’m so glad my parents didn’t listen to that advice.

When I was fifteen, I was sitting around the campfire with my family and some friends when I eagerly blurted out that I wanted to go to Ecuador with a school group. The comment stunned everyone in the group, but my parents were not surprised. I had the courage to try something new at such a young age, in a place where accessibility is often overlooked. Luckily, my parents and the teachers leading the trip were fully on board with my plans for a summer of adventure. They made every effort to make things as inclusive and accessible as possible.

My first trip to Ecuador completely changed my life and my view on accessibility and inclusivity. I figured out I am capable of so much more than I realized, that my disability does not define me, and I will not let it limit me.

I also learned this world has so much to see, and I wanted to experience more of it. There may be more struggles when it comes to travelling as a disabled person, but the joy that travel brings is so worth the effort.

This trip ignited a passion in me; I had caught the travel bug and couldn’t wait for my next adventure. Since then, I have returned to Ecuador for a second time, and I have travelled to other places, such as Mexico and Cuba.

These trips have brought me so much joy, even amidst the struggle of being disabled. As a full-time wheelchair user, travel is a lot harder to navigate. There are so many extra hoops to jump through, and there are always the scary “what-if” thoughts. Like, what if my wheelchair doesn't make it to the destination in one piece? What if there are no accessible washrooms available for hours? These are valid worries, and it is always a gamble, but the struggle and the what-ifs are worth it!

To travel with a disability, you have to be open-minded and ready to go with the flow. Things can change, plans don’t always work out, and things aren’t always accessible in the way they should be. For me, these obstacles are part of the adventure, part of the thrill of travel that most others don’t experience. I try to look at every negative situation and turn it into a positive experience.

For example, on a trip to Mexico, my husband and I requested a wheelchair-accessible room. When we arrived, all the accessible rooms were full, and we were placed in a room on the third floor. During our stay, the elevator stopped working. We ended up getting to use the service elevator and saw some behind-the-scenes of our resort. Who gets to say they got to experience that?

After my first life-changing trip to Ecuador, I returned two years later with my family to explore more of the country and to visit my friends. On our first day in Guayaquil, we wanted to visit Cerro Santa Ana, a lighthouse on a large hill that overlooked the city. Upon arrival, we realized the only way to make it to the lighthouse would be to climb 456 steps to the top. We had agreed that my mom and I would stay back while the rest of our group hiked the stairs. A group of police officers saw our group standing around discussing our plan and offered the unthinkable. They carried me, in my wheelchair, up the 456 steps and then all the way backdown, so that I could experience the lighthouse with my family. They weren’t required to do this; it wasn’t part of their job description.

They did it out of the kindness of their hearts so that I could have this experience. I will forever remember this. During the same trip to Ecuador, we visited Casa Del Arbol near Banos de Agua Santa, also known as the “Swing at the End of the World.” This swing was at the top of the side of a mountain cliff, 2600 meters above sea level. Not accessible at all. Our tour guide and my dad pulled me up the side of the cliff so I could have a once-in-a-lifetime experience. I remember our tour guide asking if I was just going to watch the others in our group swing off the cliff. I said, “heck no, I am doing this!” His eyes went wide. Not only did I swing off a cliff in the “Gateway to the Amazon,” but I was also the first one in our group to let go and spread my arms. It was such a thrilling experience! My mom captured a picture of my wheelchair with me swinging in the background. She said, “This is proof that your wheelchair does not limit you.

We visited so many other places in Ecuador that were deemed inaccessible. We challenged so many barriers, and I experienced so many things that I wouldn’t have if I were not open to a little adventure. Another highlight for us was visiting the Pailon Del Diablo waterfall. Again, this was deemed inaccessible. I am so glad that we were all willing to get through some of the tough terrain and navigate some stairs to be able to see the waterfall. It was absolutely incredible!

During our trip to Ecuador, my family was willing to make the impossible possible for me, so I could experience the many wonders this world has to offer and the joy of travel. Even though I had a broken leg and we faced challenges, this trip to Ecuador truly was a once-in-a-lifetime experience, and I did not let my wheelchair get in the way of me enjoying every moment of it.

My wheelchair has never held me back emotionally. I have always had a mindset that I can do whatever I put my mind to, even if I have to find a different way to do it. Physically, I face limitations regularly due to my chair. In 2024, my husband and I took another trip to Mexico. We had seen online that there was a chance of encountering wild sea turtles around the beach at our resort. I remember getting up at the crack of dawn, watching the sunrise as we got our snorkel masks and flippers on. As soon as I got into the ocean, I felt free.

Because I have broken my legs so many times, I am not able to walk or put any weight on them. When I am in the water, I can move freely without pain. Swimming with the wild turtles was such a core memory for us. We were able to encounter them on three different occasions. It was definitely the highlight of our trip.

The ocean has such a special place in my heart; not only is it beautiful and a joy to experience, but when I am in the water, I am free from the limits of my wheelchair.

Travel has become such a huge part of my life, and I am so glad! The trips I have been on have each made a lasting impact on who I am. I am so grateful that my parents didn’t let my disability prevent me from seeing everything this world has to offer. Travelling with a disability is hard. There is so much more you have to think about and prepare for. There will be struggles along the way, but if you have a great attitude, the struggles become a part of the story and the journey.

Travel can be scary for anyone; experiencing a new place can be intimidating, especially when there are accessibility barriers. That is where courage comes in. Have the courage to travel and try something new, and you will experience things you never thought were possible. Travel brings me so much joy; it is what I live for. To experience the world, to break barriers, and show people that I can do things they think I can’t.

Travelling with a disability is challenging, but it is so worth the adventure!

About the Author

Meagan is an avid traveller but calls Southern Manitoba home, where she lives with her husband Dustin. She works as a travel agent, having graduated from the Association of Canadian Travel Agencies and Travel Advisors. She specializes in South and Central American destinations – both in inclusive and accessible travel.

I want to tell you this is wrong. Yes, even as a person with a disability, this is wrong.

Now, I know firsthand that as a person with a disability, there is an unspoken narrative that because we are disabled, we are to ask for less, expect less, settle for less. I am completely dependent on someone else to fully assist me with going to the bathroom, getting dressed, cooking, going places and doing almost anything I want; but I still want what I want and to live life on my own terms. Later on, I will talk in depth about removing limiting beliefs; this is, and continues to be, the biggest factor that shapes my manifestation journey.

Anything you’re willing to practice, you can do. So, why not practice creating your life?

Now, before you think to yourself ‘Oh boy, another hippy-dippy, tree-hugging, granola-eating person blabbing on about manifestation’ just think about this: Spiritualists call it manifestation. Christians call it prayer. Witches call it spells. Atheists call it the placebo effect. Scientists call it quantum physics.

I’m here to tell you, it does exist. And chances are, deep down within you, you already know this to be true. Each and every one of us holds the power to create what we want. I’m also here to tell you, it is not easy. It is not a matter of saying some words up to the sky and waiting for it to magically materialize.

Creating what you want takes dedication, commitment and some deep, internal work. I have created my own desired outcomes with school, where I live, my wheelchair, my job, and finding love.

Let’s get into it.

Step 1: Set a Clear Intention

What do you want to manifest?

• Be specific. The more detailed your intention, the easier it will be for your mind to focus on it.

• Write it down. When you write it, you externalize the thought, which helps solidify it.

What I Wanted - Love: "I want to find love where I feel true acceptance of who I am, laugh often and feel joy.”

Step 2: Visualize Your Desire

Create a vivid mental image of what you want.

• Close your eyes and imagine yourself already living the life you're seeking. Picture the details—how it feels, smells, looks, and sounds.

• Engage all your senses. The more real you make it, the stronger the vibration you're sending out.

What I Visualized: I imagined myself sitting with a person; laughing and talking for hours, the sunlight shining, coffee cups sat in between us, my hand in his.

Step 3: Feel the Emotion

Emotions amplify manifestation.

• As you visualize, tap into the feelings you would have if your desire had already come true.

• Feel the gratitude, joy, excitement, and peace. The more genuine emotion you infuse into the process, the more powerful it becomes.

What I Felt – Love, acceptance, joy: In my visualization, I felt radiant love from that person and for that person, complete acceptance and joy in the form of laughter.

Step 4: Believe It’s Already Yours

Trust that what you want is already on its way.

• Remove doubt and cultivate unwavering belief. Think of manifestation as a "knowing." It's not about asking for something, it's about claiming it.

• Affirmations are powerful for this: Repeat statements like "I deserve this," "I am worthy," and "It’s already mine."

My Affirmation: “I am worthy and deserving of love.”

Step 5: Take Inspired Action

Manifestation is not just about thinking—it’s about doing.

• Take steps that align with your goals, even small ones. The universe works with those who take action toward their desires.

• Listen to your intuition. If you get a gut feeling to make a call, apply for a position, or try something new, do it.

What I did: Set up dating profiles, socialized with friends, dated and practiced self-love.

Step 6: Practice Gratitude

Gratitude amplifies the manifestation process.

• Be thankful for everything you already have and for what is on its way to you. Gratitude shifts your energy into a higher vibration, attracting more of what you want.

My Gratitude Statement: “Thank you for this opportunity to manifest love, and thank you for the experiences that are leading me to my person.”

Step 7: Trust the Timing

Let go of control and trust the process.

• Don’t obsess over how or when it will happen. The universe has its own perfect timing.

• Be patient and keep your focus on your desire, without stressing about the "when."

My Process: Whenever I felt impatient or disheartened, I reminded myself that everything has its own timing and that the Higher Power has it all planned out for me. The process is a lot easier if you’re able to surrender to a belief in something bigger than yourself.

Step 8: Be Open to Receive, while Listening to Your Inner Being

Be ready to receive the manifestation, as long as it feels right.

• Let go of preconceived notions about how your desire should come to you. The universe may bring it in unexpected ways.

• Stay open to all opportunities and possibilities.

My Cautionary Advice: Along the way, check in with yourself. Make sure that this manifestation checks the boxes and does not ask you to betray, abandon or drastically modify your values and goals. If it does, it is not meant for you.

Step 9: Repeat and Stay Consistent

• Manifestation is a process that requires consistency and repetition.

• Keep practicing the visualization, affirmations, and gratitude daily.

My Not So Popular Belief: As difficult as it may be, stay the course! The practice of not accepting every single opportunity will only fine-tune your true desire. The clearer your focus is on your goal, the easier it becomes your reality.

Now, as I said before, these steps are not easy and they are not the fast-track to everything you desire. There’s no magic wand to wave. It can be a long, arduous journey to get there. The biggest catch—yup, there’s a catch—for me, was and still is, removing limiting beliefs:

• Identify and challenge negative beliefs that contradict your desires. If you believe you’re not worthy of love, that dream job, the house or that your goals are too big, those beliefs may block the manifestation process.

  Replace them with empowering thoughts: “I am worthy of everything I desire,” or “My dreams are possible.”

It takes hard work to deconstruct old beliefs that were formed by childhood experiences, negative relationships etc., but once you unlearn and let go of all that no longer serves you, magic happens. For me, I had to reject this pre-conceived, hard-wired fallacy of my disability equating to having so little worth and value that I somehow did not deserve or am entitled to the same basic needs all humans share.

The belief in self is everything. But seeing is believing and how do we believe in something we cannot see yet? By looking for supporting evidence and letting that become the building blocks to the solid foundation needed. Ever notice that when you search for something on the Internet, your social media bombards you with everything related to that one thing? This is the social media algorithms. Algorithms analyze user behavior, interactions and interests to understand their content preferences and deliver personalized content. Your brain does the same thing. Let’s say you decide that you’d really love to adopt a dog. Pretty soon, you’ll be seeing cute puppies!

Let’s look at this from the flip side: when life's algorithm sends you for a down spiral. I went on quite a few dates that either never showed up or only interested in me for sex. Now I could have taken this as evidence of not being worth even meeting or only being good enough for sex. After awhile, I could have easily convinced myself that my dating experience spoke directly to my value and that these are the only possible outcomes to dating, so why bother? Be careful because emotions are a huge contributing factor to manifestation. Control the algorithm. Choose your thoughts, people, places and actions carefully. Shift when needed.

You know what else helps manifestation? Jealousy. Yes, I do not subscribe to the idea that jealousy is inherently bad! It's okay to want what others have. Jealousy serves us as road signs that points us in the direction of what is important to us. In my twenties, particularly, I found myself gravitating toward people who also faced challenges with disabilities but had success in areas of life that I desired; career, marriage, house ownership, etc. I used this as steady inspiration and motivation to keep going.

Remember, whatever you believe of yourself will be true; good or bad. I truly believe that because I knew that I was smart, hardworking, loving and deserving of love, I accomplished the goals I pursued—a BA in English, graduated from Applied Counseling Certificate Program, a great career in the social services field, and met and married a man that truly loves and accepts me.

Manifestation is the alignment of mindset, belief, emotion, and action. The more you practice these steps and fine tune your desires, the stronger your manifestation abilities will become. The key is to keep a positive and open mind, be grateful, trust in the process, shed limiting beliefs, believe in your desires, and take action toward them.

With that, get out there and create the life you want! The life you want depends on it.

About the Author

Bonnie lives in Portage la Prairie, Manitoba, with her husband and their pets. Born with Larsen’s Syndrome and living with inoperable scoliosis, she became paralyzed at age 12. She is a content creator and the founder/therapist of Connect_2_Heal counselling services. In her spare time, she enjoys painting, reading, and making the most of Manitoba’s short summers with her family and pets.

In society, accessibility has improved greatly over the years. However, when it comes to hotel room accessibility, an overhaul is needed.

Having a grab bar in a bathroom and a lower placed peep hole, does not constitute “accessible.”

Pulling into the hotel parking lot, the very few handicapped parking spots are all taken. Being that it is the middle of winter, having to park further away from the entrance just makes things that much more challenging.

Once at the entrance, the very small automatic door button, is placed in such a spot where I cannot reach it. My helper has all the luggage - including my lift - so their hands are full. Thankfully someone is coming out and opens the door.

The room that we booked was supposed to be an “accessible” room. The entrance is very narrow and hard to get through. This is a rough start to the stay.

Hotel room design is extremely poor when it comes to beds. When travelling, a lot of equipment has to come with me—my powerchair and my lift are some of the bigger items. With two beds, plus my equipment, most of the time I can barely navigate.

Most beds have a platform under the bed and the lift cannot pass through. This makes it extra difficult for me and my helper. It takes a lot of maneuvering on my helper’s part, because I am further away from the bed. This creates hardship, both for me and my helper. At home, I have a bed where the head and feet can both rise. This takes the pressure off my back and legs. Due to the fact that I have to lay flat on a hotel bed, I am in pain for most of the night and get little sleep. My back is so sore in the morning that it takes about an hour to loosen up.

Carpet is in 97% of hotel rooms. With me using a lift to transfer, having to move the lift on carpet is extremely difficult. It would be great if one day, all accessible hotel rooms had a no carpet mandate.

Hotels sometimes feel that they have a great idea for giving disabled individuals more space. This is done by having an accessible room, that only features one king size bed. Yes, this does give the room more space. However, what if the guest and helper, don’t want to sleep in the same bed?

The way that the bathrooms are designed needs a lot of improving. The toilets can be placed where there’s little to no grab bars to use for support. This makes the situation difficult for those with weak balance. Also, the fact that some bathroom doorways are narrow can make things extra challenging. When I have to transfer to the toilet using my lift, if there is little room, the situation can be high stress and almost impossible to accomplish.

Another annoyance is the sink. In almost every hotel room the sink is solid underneath. This causes me to be unable to wash up by myself.

In my ideal world, there would be a chain hotel that provides a lift, shower commode and an adjustable bed, for its disabled guests. This would ease a lot of stress and effort during a stay.

This may sound surprising, but in the year 2025, there seems to be a big shortage of these rooms. A person has to call months ahead to get a room booked. Hotels should have more accessible rooms to provide. These rooms seem to be in big demand, so why not have more?

Whether it’s for work, pleasure, or just because, disabled people will always need a place to stay.

The people who design these rooms have to start taking into consideration that accessible is not just a word, it is a right!

All of this might sound like a lot, but these changes will allow disabled guests to experience a level of comfort, that is usually only found in a dream.

You get an opportunity—but not just any opportunity—a chance to be the role model that you wished you had when you were growing up. I was 18 years old when I got the news that I was going to be an ambassador for Manitoba Possible. I thought to myself, how can I be this role model when I’m just a kid myself with so much to learn? Was I even adequate to step into this role? 

These past two years have changed me in ways I never imagined possible. Now, I’ve done a bunch of public speaking events, had a reel go viral, and published a children’s book.

Growing up, though, I never saw the true meaning of representation and diversity. I mean, yes, I saw other disabled students like me at school. But still, I rarely saw a person like me positively represented. I think I was ashamed for so long about having a disability. I shoved it down hoping that nobody would ever find out that I lived with a disability.  

I am a huge Disney lover. My father would always download movies for my sister and I to watch, but as I look back now, there was hardly a positive look on disabilities. The Hunchback of Notre Dame, The Little Mermaid, and Pocahontas—these stories showed us that being different is odd, we must change ourselves to fit in, and having different backgrounds and abilities is going outside the concept of being normal.  

I started to hate myself for being different because nobody was disabled, just like me. I tried too hard to fit in and let society shape me. I was hanging out with the wrong crowd and even shaming the disabled community even though I was a part of it.  

It wasn’t until high school that I slowly realized what it truly meant to be a person with disabilities and how to be proud of who I was. I had a social media presence that told my story of living with disabilities, and I received so many compliments from people saying how my journey inspired them and taught them about disabilities. So, I kept making them and publishing them without even realizing that I was no longer ashamed. I was proud. 

I was proud not only for finally recognizing myself as a disabled person but also proud to being able to belong to such an amazing community. I had experienced a lot of self-doubt, and to be brutally honest, I still do. The way I’ve dealt with doubts is by having a spiritual connection and looking up to people who I am inspired by.  

Recently I got the opportunity to be on TV, sharing my story about using assistive technology, text-to-speech, on my iPad. Someone asked if I was ashamed of letting my city see my life as a disabled person. At first, I was upset, but then I realized wow some people are uneducated about these things and it’s my job as a role model to be teaching people about disabilities and what tools they use to go through their day-to-day life.  

What really clicked for me is when I started being truly authentically myself and fully understanding the importance of being who I am. I think that’s why having role models with disabilities is crucial because having someone who deals with the same disability as you can make you feel like you’re not alone and you can do this.  

Even though I do make mistakes, I am beyond humbled and blessed to call this opportunity as an ambassador one of my greatest accomplishments. I hope that people will look up to me and see the role model that I so desperately wanted and deserved to look up to.  

About the Author

Hannah is a student in Winnipeg. Her advocacy and writing are motivated by her personal experiences growing up. Hannah loves spending time with her two dogs, Mai and Madi, and has published her first children's book in 2024 called The Magical Runner.

When I was 14 years old, a block of ice hit me in the head, and I had to undergo emergency brain surgery because it caused an artery underneath my skull to pop.

I was in the hospital for three weeks afterward, and during the first week, I was in a coma. When I woke up, I found that the right side of my body was paralyzed. I slowly regained movement, but I had to relearn how to walk, talk, and eat. This was followed by eight months of constant physiotherapy and occupational therapy.

To this day, I face many challenges from my injury; I have a cognitive and a learning disability that impairs my ability to process thoughts and ideas and remember things.

In the years following my injury, the thought of going to university terrified me. I struggled significantly in high school to keep up with my classmates. Paying attention, retaining the concepts we were learning, and then writing tests were extremely challenging for me. Because of this, I thought there was no way I would survive university, which left me feeling defeated. I had always wanted to go to university but didn’t know if I could.

When I graduated high school, I took a year off to give myself time to process my feelings about my injury and figure out what I wanted to do with my life. I remember talking with my family about wanting to go to university but fearing it because of my disability.

My family suggested I look into the vocational rehabilitation at Manitoba Possible. I made an appointment with an intake counsellor and shared that I wanted to go to university, but I felt it was impossible given my struggles in high school and my injury. To my surprise, they told me that my dream of going to university was not impossible and that there was a lot of support available to help make this dream a reality.

Over the next couple of months, I met with my intake counsellor to discuss my interests and what I wanted to do at university. They helped me find direction, and we developed a plan. When I decided to apply, they told me about Student Accessibility Services (SAS) at the University of Manitoba. I was grateful that the university offered a service to accommodate students living with disabilities. I made an appointment with SAS and discussed my disability and the challenges I faced in high school.

They were very understanding and set up accommodations like extra time on assignments and exams, a quiet room to take tests, and volunteer note-takers. For the first time, with this support, my dream of going to university felt possible.

These supports were put into action and were especially helpful when I was taking challenging classes like calculus. Having the option to take exams in a quiet room and having extra time saved me. In high school, without the additional time and surrounded by other students, I would get distracted while writing exams, comparing my progress to others in the class. The extra time I received allowed me to take the time I needed to understand the questions being asked. If I had been writing my exams in the classroom, I would not have passed the class.

Currently, I am earning my master’s degree in cryptocurrency and blockchain. It has taken a lot of effort, but with all the support I have received, I am so proud to be here. Cryptocurrency has been a passion of mine for the past eight years, and it’s my dream to pursue a career in that field. Eight years ago, I would have thought this was impossible.

If I can give advice to anyone with a disability considering university, I would say, "Do it." I have grown so much throughout my degree and have developed a great deal of confidence in myself.

Having a disability is not something to be ashamed of, nor is it a limit to what you can accomplish. Take the first couple of steps, and the rest will follow. Find something that interests you and take a few classes on that topic. Go slow; my three-year degree took me five years. Reach out to the support that is available to make learning accessible.

By sharing my journey of going to university as a person with a disability, I want to illustrate that nothing is impossible. Even if you think you can’t do something, you can. It is so important to share your dreams and your thoughts and feelings about pursuing those dreams with others. If I had never expressed my desire to go to university out of fear, I would have never discovered anything about the support that exists out there.

Editor’s Note: This blog post was written by Tom Landy in March 2024. Since then, the Manitoba government has provided new funding for the Manitoba Wheelchair Program. Tom helped bring much-needed attention to the critical issue.

It's weird, but whenever I sleep and have dreams that I can remember, I'm never actually wheelchair-bound, despite being confined to one since I was about two years old.  As I was born with a rare degenerative illness called Spinal Muscular Atrophy, I couldn't walk at all or sit without support for long periods.  While my hands and arms did have some mobility in them when I was younger, I didn't have enough strength to push a manual wheelchair myself. 

I don't recall how it happened exactly, but in 1980 when I was only four, I became the youngest recipient of a motorized wheelchair in Canada. 

That wheelchair just became a part of me, most likely because I was so young.  It was second nature to me almost instantly and I didn't think about it all that much. I went to regular schools and even though I was different than the other kids, no one treated me like I was or if they did those instances were very few and far between.  Most people thought it was cool since they had never seen anything like that. Sometimes it was an advantage, even, as I was one of the best goalies in street hockey or handball around mainly because of my sheer size compared to the other children until they got bigger.     

For a variety of reasons from body changes to outdated technology to general wear and tear, wheelchairs must be replaced every so often. My first chair is long gone now, and I've had a few since then.  As my condition deteriorated, my current chair started becoming so uncomfortable that I could only sit in it for maybe an hour or two tops. It was also getting difficult to find parts for my model. 

So, in 2019, both myself and my occupational therapist (OT) knew it was time for a replacement and I embarked on another journey for a new wheelchair.    

Having been through this process a few times in the past I kind of knew what to expect - or at least I thought I did.  An application for the wheelchair has to be filed by a medical professional.  Funding has to be requested for expensive pieces of equipment.  Several meetings are necessary to hash everything out and to ensure the modifications all come together at the end to benefit my overall health.  I'm well aware that this is not something that happens overnight. However, I wasn't expecting the absolute nightmare that would follow - and continues to this day. 

Before I get into that, though, let me first say that I know that we had a COVID-19 outbreak in the middle of all of this and that slowed normality down to a crawl. In-person meetings were postponed to reduce contact. I get that.  But during this pandemic, many of us also adapted by working from home, video chatting, etc., to still keep things going. Unfortunately very little of that happened in my experience. 

I was notified on February 9, 2022, that the application for my wheelchair was "officially submitted". That's right, we're talking two years later. I still have no explanation as to why it took this amount of time just to file paperwork for a wheelchair, especially when one would think that that isn't something that would be held up by a worldwide health scare.  

The severity of my illness has also left me pretty much a quadriplegic now. Even though I still have feeling everywhere I can barely move on my own anymore and that means I need specialized equipment. I have to drive my wheelchair using a sip-n-puff mechanism where I blow or suck into a straw-like device to maneuver my chair around. Devices like this require additional funding. Not only did they make me take a "driver test" to get the product when I'm very familiar with these units as I've been using similar ones for over 25 years, but it took another year for that approval to go through and finalize the wheelchair order.   

There is often some debate whether said equipment is an absolute must-have or not and I find that mind-boggling, to say the least. If an OT or doctor says a physically disabled person needs a specific piece of equipment to improve their well-being, that should be it.  End of story.  Questioning the validity of a request and making the recipient jump through hoops for no reason only causes more delays. 

There is so much more red tape I had to go through (and still am) that I just can't cover it all here, as I am limited by word count.  But after taking my story to the news last summer hoping for change, I was so disheartened that very few seemed to even take notice.  One positive is that Manitoba Possible did contact me personally almost immediately after being in the press offering help to provide me with a wheelchair, but that wasn't the problem.  Manitoba Possible had already promptly approved my wheelchair order once it got to them a couple of months prior. And just recently the government gave them more funding to expand their department, and I am happy about that. 

But that's a small drop in the bucket and more needs to be fixed. A lot more. 

When I think back to my childhood and young adulthood, I felt that there was a good system in place and that the people working within it to help people with disabilities genuinely cared.  If you asked me how I feel about that now, I would say that the system is severely broken. 

We are supposed to be living in an inclusive society, and to be honest, I have never felt more excluded or neglected in my entire life. It shouldn't be this way, but it is a harsh reality. 

I believe we need advisors who have first-hand experience being severely disabled. OTs have training and are very knowledgeable in many things, but they haven't been in our shoes. If a disabled advisor was brought into the loop to say what works and what doesn't, I think this would do wonders. Not only that, it would provide employment to those who have a very hard time finding jobs.

Although I do have my new wheelchair now since last September, it's sitting in the corner, aging.  I still can't use it until the seating contractor makes it usable for my unique body structure and that won't be until the summer if I'm lucky.  Mismanagement, lack of organization, poor communication, and more are all contributing factors to that. 

The part of me that made me mobile has been missing for four-plus years and I'm sure feeling it now.   

When I was in my post-graduate marketing program at Seneca College in Toronto, I ended up requesting academic accommodations for a course that involved delivering many presentations due to my speech disability. However, I found the accommodations process to be quite cumbersome.

First, I needed to get a note signed by my speech therapist, effectively proving that I have a speech disability and that I needed accommodations. In other words, I needed to prove to able-bodied school administrators that I have a speech disability. Once I submitted my evidence like I was on trial, I sat down with my instructor to come up with an arrangement, or rather the actual accommodation. We decided that, instead assigning me speeches like my peers would, I would instead edit my classmates’ speeches for course credit.

After a few weeks of this alternative form of assessment, I realized that my accommodations were actually exacerbating my disability. By being the only one in my course who was not giving speeches, I felt like the accommodation was exacerbating the difference between myself and my able-bodied peers.

This occurred in 2009. Since then, I’ve established a career in accessibility justice, supporting students and workers with disabilities — as an Academic Accommodations Advisor at a private university, then as an Accessibility Consultant, and now as a Job Developer. It was an interesting transition going from a student receiving accommodations to being on the other end delivering accommodations to students in need of support.

Having been on both sides of the accommodations process, here are a few things I’ve learned for students, faculty and administrators to keep in mind:

Accommodations are basic human needs, not “special needs”

Historically, accessibility supports and accommodations have been referred to as “special needs” — even today, I see school boards still use this outdated terminology to describe students who have accommodations. 

But accommodations are anything but “special needs.” This problematic term feeds the misconception that accommodations are advantages or privileges bestowed onto students, but they are anything but that. 

Accommodations are not meant to reduce academic standards or make it easier for students with disabilities. But they are designed to reduce any barriers that students may be facing as a result of their disability and level the playing field for those experiencing barriers. In that sense, accommodations are basic human needs.

Disclosure is not needed to receive accommodations

The fact that I needed to supply documentation before receiving my accommodations at Seneca speaks to the issue of students having to prove their disability before — a process that sometimes involves jumping through hoops — before they can get support. But one thing to highlight is that not everyone is comfortable sharing the details of their disability and that disclosure is always a personal choice. This is precisely why accessibility laws like the Accessibility for Manitobans Act or, in my case, the Accessibility for Ontarians with Disabilities Act exist so that we can get reasonable accommodations without needing to disclose. 

Advocating for your needs and for accommodations is vastly different from simply disclosing your disability. For instance, saying “I have ADHD” is different from “I have trouble with getting started on tasks and assignments.” What matters are your needs and the barriers you face as a result of your disability rather than the disability itself.

Accessibility & accommodations are two sides of the same coin

Essentially, accommodations are a reaction to how accessible the learning environment is for students with disabilities. In other words, the more inaccessible a learning environment is, the more individual accommodations are needed. 

In my case at Seneca College, for instance, I needed alternative forms of assignments in lieu of oral presentations because of my speech disability. While I worked on the other side of the continuum, alternative assignments emerged as a common accommodation among students I’ve worked with — as people have different communication styles. But instructors need to incorporate this kind of flexibility into their courses to begin with, as opposed to students having to ask for accommodations. What’s stopping instructors from giving students a choice between submitting a paper, delivering a presentation or generating another format altogether? This would likely make the accommodation less necessary. 

And that’s precisely my point — instead of having students jump through the hoops and essentially prove their disability to receive accommodations and accessibility supports, we can do more to accommodate students from the beginning.

How? By making courses and learning environments more accessible, so that fewer individual accommodations are needed.

About the Author

Samuel Dunsiger (he/him) is a freelance writer, career advisor and accessibility advocate who identifies as disabled, and works within the intersection of employment and disability. He enjoys using storytelling to normalize living with disability. When not writing or talking shop, he likes to play board games, travel and put together IKEA furniture. He has just migrated from Toronto to Ottawa, where he now lives with his fiancee.

Hi, my name is Cristina and I am terrible at self-advocacy.

While this confession might not be a big deal for some, having as complex a physical disability as spinal muscular atrophy (SMA) makes the above statement kind of a big deal.

For those unfamiliar, SMA is a chronic condition significantly affecting my muscles and energy level. I have near-paralysis in my arms and legs and experience severe fatigue on a daily basis. As my care needs become more complex, I find myself reflecting on the importance of self-advocacy and honestly am overwhelmed by the added responsibility.

“You are your own best advocate” is a popular phrase but what does it actually mean? While this phrase is supposed to be 100% empowering, once one starts to break down how this plays out in real life, it isn’t as unicorns and rainbows as it sounds.

Don’t get me wrong, being our own advocate is necessary. I mean, who else will do it? Fairy godmothers with magic wands are usually in short supply so it’s up to us to fight for our human rights.

However, not taking no for an answer means constantly taking from our limited and already-depleted time and energy. While I acknowledge not every disability affects energy to the extent SMA does, I believe we all are being stretched by life’s responsibilities. As such, people often talk about the importance of a work/life balance but I believe a work/life/advocacy balance is more reflective of the disabled experience.

While this diagram shows perfectly balanced circles, I think we all know life isn’t perfect. On any given day the circles might be different sizes, with one sphere taking up more oxygen than the others, but I don’t think I’m alone to feel like self-advocacy is especially draining. In order to protect my mental health, I have made a series of tough personal choices that have greatly altered the course of my life.

For instance, in my first few years of university I poured everything into being a successful student, hoping that graduating with a BA would bring me financial stability as a disabled woman. However, in order to accomplish my goal, my life was extremely unbalanced.

Friendships were sidelined, medical appointments were never made, meetings with financial advisers were never pursued, and self-advocacy wasn’t even on my radar. In fact, I believed I was being my own advocate by not allowing my limited energy to be overtaken by the bureaucracy of the disability system.

Anyone who has filled out tedious disability funding forms or been in lengthy meetings being told no to vital care supports will understand my frustration. In my first semester I was having enough of a hard time figuring out how to use the library key card, never mind establishing all the supports I needed transitioning from child to adult service departments.

I remember one meeting in particular being especially exasperating. Scheduled a day before my first ever university midterm, I was already experiencing test anxiety and what turned out to be a three-hour appointment did not help.

During the meeting it was apparent this person was misinformed about my disability. They were new to the position and completely out of line with what care supports were available. After going through countless forms and policy booklets—some of which were clearly inapplicable to my situation—I was then told information that I knew was factually inaccurate. While I did question this person, I largely stayed quiet even though I had valuable knowledge that came with lived experience.

Why didn’t I press harder? “The squeaky wheel gets the grease,” but what if all I could conjure up was a silent scream? Unfortunately, I just did not have the physical or mental energy to talk to their supervisor, file a complaint, and go through an appeal process. As a result, there are policies from that meeting still affecting me to this day.

While I attribute some of my actions (or inactions) to immaturity, I also realize I cannot underestimate the added pressure of being disabled. As an adult, there are many issues I feel I should tackle and feel like a failure when I cannot physically and mentally take more on my plate. Thus, protecting my own mental health must be a part of the conversation and I now understand self-advocacy to be just as much about addressing a microaggression as changing policy.

To this point, author and activist Cleo Wade writes, “[N]ot every ground is a battleground.”1 In a time when we as a society are expected to take a stand against everything and everyone this seems so counterintuitive, especially when many people’s human rights are in grave danger of being taken away.

I don’t believe for a second Wade is suggesting us to be apathetic but I think she is acknowledging what we are all capable of handling. In a way, her statement is a wonderful expression of self-love because it releases us from the unrealistic pressure to be perfect.

So how do we establish a balanced, well-adjusted life with a disability or chronic illness?

Honestly, I don’t know! With no handbook, being disabled often means relying on our intuition to guide us when we encounter some of those cringy moments of ableism.

But I do know I will keep trying. Even if I get it wrong sometimes, I will live to press on another day. One day self-advocacy might look like writing emails and making appointments, while the next might be taking a mental health day to spend time with my family dog, Teemu.

What are some ways you show up as a self-advocate? Whatever the version of self-advocacy is for you, may you find ways to recharge, press on, and be gracious with yourself when life isn’t perfect. Now, please excuse me while I go play with my dog!

If you have experience of disability or facing barriers to full participation, we want to hear from you! Manitoba Possible is inviting pitches for "Explore Possible”-- amplifying voices and challenging assumptions, with pieces written by the disability community.   

We’re looking for a wide-range of pitches: personal stories, perspectives and reflections, or amplifying key issues and ideas, just to name a few.

What We're Looking For: Never-before-published first-person submission (written or ASL) along with original, copyright-free accompanying photos and/or videos.  

Where Your Story Will Be Shared: Successful pitches will be shared right here on the Explore Possible blog. Your piece will also be shared on Manitoba Possible’s social media, and included in our newsletter, "The Possible.” 

Compensation: We offer a one-time $200 honorarium per accepted and submitted article.

How to Pitch your Story

Introduce yourself, where you live, and provide an overview of your proposed piece in one or two paragraphs. Include details on potential word count, headline, and accompanying visuals. While we appreciate all pitches, only a limited number can be accepted.

If your pitch is accepted, we'll contact you to discuss deadlines, providing a clear agreement for your reference. 

We are accepting submissions for Explore Possible on an ongoing basis.

Submit your pitch to:

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jcable@manitobapossible.ca

Ableism is not always what you think. What if I told you that, more often than not, discrimination and disrespect towards people with disabilities are camouflaged in so-called “kindness?” What if I told you that it is mostly committed not by the malicious-minded, but by the gentlest of souls? Don’t believe me? I invite you to come with me on a trip to the local grocery store and find out the truth about ableism. 

One day, after gathering items in my cart, I joined the checkout line in my powered wheelchair alongside my assistant. The cashier had left the counter briefly to go check a product in one of the aisles. On her way back to the register she laid eyes on me, and greeted me with a “Hi, how are you? Nice to see you!” 

Remember that old line about the importance of not only what you say, but how you say it? The cashier’s words were high-pitched, similar to the tone I use when calling my puppies or interacting with my neighbour’s infant. You know, the classic “tickle tickle” or “who’s a good girl/boy?” Even more, the cashier’s body language, particularly her head tilt, radiated a sense of pity for me, the “young disabled girl.” 

“Good, thank you,” I murmured, forcing a smile. Little did I realize the extent of what I was in for.

 While my assistant was occupied with organizing my groceries at the end of the counter, I was waiting to make the payment. I slid my bank card from its slot and handed it to the cashier, asking her to tap it.

 “Aww, no problem,” she responded in the same tone. “Thank you, baby!”

Over my twenty-two years of life I’ve encountered much “infant-talk,” but this was the first time I have literally been called one. 

I immediately glanced at the customers behind me as well as those standing in the next checkout line. Our brief conversation had drawn considerable attention, and each onlooker smiled in approval of the “sweet service” I was receiving. 

 If you want to understand how I felt that day, you must know something about me. I like people. To echo many others in my community, social life with a disability is challenging. When it comes to standing up for yourself in moments like this, a craving for social desirability combined with a cup of humiliation, a tablespoon of fear, and a dash of pride is the ultimate recipe for failure. Since witnesses accepted the cashier’s behaviour as courteous, I knew any effort I made to combat it would have been deemed uncivil. The advocate within me froze. Instinctually, I fabricated a smile, masked my frustration with politeness, and left the store.

To be spoken to in this way is to be reduced to my most obvious characteristic - my disability. I was made to feel that no other part of me mattered at that moment; not my name, not my appearance, not my morals, not my interests, not any other aspect of my being. Society had prescribed me the large pill of belittlement. It rolled around my mouth until a wave of frustration washed it down. The side effects on my brain were immediate. She doesn’t even know me……...but maybe she’s right? I mean, I do need lots of help. Surely, though, I have more lived experience than an infant. I have a right to be respected, but standing up for myself may have compromised my reputation. Should I even care about that? My chest began to burn. I knew that tomorrow this pill would be prescribed again, if not to me, to someone like me. 

Over the years I have had the privilege of interacting with elderly members of the disability community. The fact the very same prescription, whether in medical, public, or family situations, is being disproportionately imposed on them is something I have found particularly perplexing. The seniors in our communities possess decades of first-hand knowledge and experience. In many cases, the dedication they invested in their respective careers is something that we, as younger individuals, have benefitted from in countless ways. Some had even put their lives on the line so that we could experience freedom. As a young generation, seniors are the reason we know life, yet society condones a means of communication that implies they’ve barely lived beyond a day. 

When this topic arises, many people assume that I am angry at the individuals who act so undesirably. While I certainly do not excuse their behaviour, I believe it is imperative to attempt to view the situation through their eyes. You have to understand that the cashier, and people who behave similarly, may have been raised in a school system that never practiced inclusion. 

Perhaps the only disability conversation in which they have engaged is one that contained terminology not indicative of our humanity. In their mind, pity and empathy could exist undifferentiated. Maybe they were made to believe that, for people like us, autonomy is impossible. It is unjust to incriminate the uninformed. When someone fails to be exposed to quality disability information, oppression and misconception become their only educator. 

Looking back at my situation in the grocery store, I arrived at another realization. As strongly as the pill of belittlement was being prescribed that day, I was the one who ultimately chose to consume it. I believe we, as members of the disability community, have an option to create respectful learning opportunities out of these moments. A strategy I occasionally employ is to initiate small talk in which I share about my post-secondary endeavours or any aspect of my life that may clue them in on the error they’re making with their high speech tone. This is typically met with shock, and their voice becomes normal as my humanity seeps through my physical limitations. Alternatively, I know some individuals with disabilities who take a more direct approach, requesting not to be spoken to in such a disrespectful tone. While I failed to muster the courage to do any of these at that moment, I see value in facilitating such learning opportunities.

This experience has inspired me to develop a call to action for people with and without disabilities. To individuals in my community, I urge you to know your worth. When prescribed the pill of belittlement in the face of social pressure, remember that physiological typicality was never a prerequisite to the birthright of basic respect. We are the experts on a life lived differently. In the midst of frustration, it is important to find the patience and courage to contribute to the broader population’s understanding of the world through our eyes. 

For those employed in the public sector or people who interact with differently-abled folks of all ages, I challenge you to critically think about how you communicate. Base your idea of courtesy on how you would want to be treated. Make no mistake. This is not a call to refine your professional etiquette or study the Human Rights Code, because these offer no viable reparation. Rather, this is a request to never let disability overshadow other important characteristics that make us uniquely human. It is with this that the true solution lies. 

On that day at the grocery store, unintentional ableism silenced me. These are the words I withheld.

About the Author

Sarah Anderson is a fourth-year Faculty of Education student at the University of Winnipeg. A lifelong wheelchair user and client of Manitoba Possible, Sarah’s passion for advocating for the disability community has taken the forms of writing, speaking, and ambassador roles across numerous organizations. She currently sits on the University of Winnipeg Students’ Association Board of Directors and looks forward to graduating next year. Through working with youth, Sarah hopes to promote disability acceptance and increase the diversity of the teaching field.

Explore Possible

This blog post is part of Explore Possible, an initiative by Manitoba Possible to amplify stories, perspectives about disability, accessibility, and inclusion.

Read more at manitobapossible.ca/explore-possible or continue on to our latest posts by clicking the titles and arrows in the bottom corners!

Living with Bipolar II disorder has never been easy.  It involves long periods of depression, interspersed with episodes of hypomania (a lesser form of mania).  I experience a rapid-cycling form of this illness, where ups and downs occur close together.  Therefore, at my 9 to 5 job, I could go above and beyond expectations during a state of hypomania, working between my desk and with the public in a flurry of industriousness.  However, the very next day I could phone in sick, unable to leave my bed.

When calling in sick, I could barely mumble, “I’m not feeling well, I can’t come into work today,” and hang up quickly to avoid questioning.  I felt self-conscious, assuming people would label me as ‘crazy,’ or deny I had a real medical condition.  This self-protective secrecy, and the sporadic nature of my illness, created suspicion.  Rumours circulated that I was lazy, making up excuses to miss work.  Those who formed their opinion on these unfounded accusations treated me poorly, and it escalated to the point of having to report their behaviour to Human Resources.  If they had demonstrated genuine concern, as opposed to prejudging, it would have created a better working atmosphere for everyone, including myself.  Instead, they generated undue tension, and my depression and anxiety worsened.

Troublesome Times

Partway through my 12-month position, I had a mental breakdown.  I told my boss I was in the hospital and wasn’t sure when I could return to work.  He was very understanding and didn’t ask any prying questions, but rather accepted what was happening and adapted to it, much like my sick days.

A well-meaning co-worker called the hospital and found out I was in the psychiatric ward.  She told my work friends, and they collectively decided not to tell others.  Like me, they feared some might criticize, or try to invalidate my illness.  She later stated, “I can’t imagine having mental issues while working at this place,” noting the very unhealthy emotional environment.  She was very supportive, which made me feel better about returning to work.  I really appreciated her kindness.

While away, my boss was replaced. The new boss kept calling, asking for a return-to-work date, but when I phoned to let her know I would be returning on Monday, I was met with a well-worded, ‘don’t bother coming back.’  Although I only had about a month left in my term, I was offered no reason why my position was ending early.  I felt no closure and suspected my health played a role in that decision.

New Beginnings

I started a new job, but anxiety reared its ugly head, and I often found myself in the bathroom throwing up.  I wore long-sleeve sweaters amidst the summer heat to hide self-harm.  It was hard to arrive on time in the mornings, as my medications made me sleepy, and it was difficult to concentrate on basic tasks.  I was also misdiagnosed as having major depression, (my Bipolar II diagnosis came later) therefore the medications were not working properly.

After a while, I recognized I could not do my job effectively; I was just too sick.  Both the quality and quantity of my work were suffering.  I also had a lot of unpaid sick leave, which affected both the company and my own finances.

I approached my boss to reveal why I was missing work, and how my condition was negatively impacting my performance.  My boss curtly stated, “I don’t want to know.  Take it up with HR.”  I wish I would have received some form of moral support or a hearing ear, but she didn’t want to get involved.

At a performance review, my boss gave me a failing grade for ‘reliability.’  An HR representative was present, so after the review, I tried to explain how my emotional condition was affecting my dependability.  I wanted to write my side of the story in the ‘employee comments’ section, but she refused to hand the paper back, denying any sort of link between reliability and my mental illness.  I felt misunderstood and quite dejected.

HR suggested I work afternoons and have mornings covered by part-time disability.  However, I found out the hard way that Bipolar II is not a part-time ailment.  I could not allow depression to run its course during my time off, then work during periods of hypomania.

Improvements

I finally realized I had to accept the provision of long-term disability.  I was properly diagnosed with Bipolar II and put on new medications.  I gained clarity of mind I hadn’t experienced in years.  Not having to work anymore allowed for much-needed time to learn coping strategies, and come to terms with my illness.  I am still not well enough to work, but my mental health has improved immensely.

Overall, people with mental disabilities are greatly misunderstood.  Sufferers get labelled as lazy, unreliable people when in reality we are just trying to get by.  I kept things hidden due to the stigma of mental illness, and it’s unfortunate I felt I had to.  Not only did it prevent me from possibly getting help earlier, but it made for a tense environment, and caused relationships to crumble.  If someone is struggling, we can all make a difference by simply talking, listening, and caring.  We need better communication and support for people with mental illness moving forward.  Nevertheless, I hope my experience contributes to mental health awareness in the workplace.

About the Author

Audrey Kilbreath holds a BA from the University of Regina in English Studies and Psychology.  Her favourite pastime is writing; from personal essays, to poetry, to children’s stories.  She lives in Weyburn, Saskatchewan with her husband Jachin.

Explore Possible

This blog post is part of Explore Possible, an initiative by Manitoba Possible to amplify stories, perspectives about disability, accessibility, and inclusion.

Read more at manitobapossible.ca/explore-possible or continue on to our latest posts by clicking the titles and arrows in the bottom corners!

I am proud to consider myself an emerging artist. I write prose, poetry, plays, and articles, and I also write, produce, and perform music. 

I’m also proud to be neurodivergent. I was told I’m autistic at age 7, and told I have other things in the years since, such as anxiety and OCD. I’m also in the process of getting diagnosed with ADHD. At this point, I feel like doctors want me to rack up half the DSM! 

As I said, though, I’m proud of who I am. I don’t let my disabilities hold me back. I embrace them. After all, I don’t know who I’d be if I hadn’t been born this way; would I have the same strengths, gifts, and passions? 

That said, I live in a world where the dominant neurotype is one different from mine, and that means I often struggle with getting by, and have access needs others don’t. 

This, to be honest, made it very difficult for me to break into the local arts scene, and for a number of reasons. Most days, I have a rather limited amount of energy - and that energy can be taken up by just about anything, from a break in routine, to not sleeping well, to running into a bout of loud noise. Sure, nobody likes any of those, but for me, it’s a real shock to the system, and can leave me exhausted and off-kilter for days on end.

For example: I live in Surrey, but do most of my work in Vancouver - it’s where a lot of the art is. But, getting to Vancouver, is an hour or two of transit. If I wanted to do a once-a-week mentorship, I’d not only have to find time for it outside school and other commitments - shifting my precious routines around - and keep my energy levels high enough for hours of transit there and back. Often, my mentorships would happen on the same days as my schooling, which already left me tired. 

These energy levels also affect the severity of my second problem - if I’m tired, I won’t have the energy to mask my neurodivergency. 

For better or worse, when I’m not consciously mimicking neurotypical behaviour, I am visibly neurodivergent - or, at least, I’m neurodivergent in a way that’s visible, even if it’s not recognized as such. I’m fidgety–often doodling, fiddling with my phone, wringing my hands, or moving around even when I’m talking to people or listening to a presentation. My vocal inflections and facial expressions are sometimes misread as disinterested, upset, or condescending, whether or not I mean it. I also often wear noise-cancelling headphones when I’m out, even when I’m socializing, and I hate eye contact more than anyone I know. 

Some days, these symptoms are manageable. If I have it in me, I can not only pass as allistic (non-autistic), but appear peppy, fun, and full of energy and excitement! 

But if I’m already tired, I don’t have it in me to, say, make eye contact or go around in public without my headphones. I come off as standoffish and bored.

I don’t think people are automatically ableist for making those kinds of assumptions. I don’t have the average presentation, and it’s not anyone’s fault it’s less common, but it’s something I find myself worried about. Like, what if people assume I’m disinterested in them and it ruins potential opportunities or friendships? 

My first serious paid creative mentorships were in-person, in early 2020. That was on my mind throughout our weekly meets: would I be accepted by my fellow creatives, or was I just weird (and not in a good, artsy way)? 

For better or worse, I wouldn’t be asking myself that question for long - enter COVID-19, stage left.

Thriving in the Digital World

The two mentorships I was in went online. I tuned in from my bedroom, far from everyone I’d spent the last two months with. Little did I know, this would be a blessing in disguise. For starters, the fact I didn’t have to take transit meant I had more time on my hands - time I not only used to rest, but to spend seeking out other opportunities. Online ones, sure, but I digress: the digital world gave me the ability to take on more work and make more connections. 

And even with this extra workload, I found myself having more energy, now that it wasn’t sapped by transit or breaks in routine. All I had to do to arrive at my commitments was crawl out of bed and shamble over to my desk. I used my spare energy to actually get dressed and look nice which was a cinch because people only ever saw me from the chest-up! Plus, if even that was too hard, I could just keep my camera off. 

The digital world also dealt away with some aspects of body language that’d always stressed me out. I could fidget out of my camera’s view, and eye contact didn’t matter anymore, because everyone was looking at their screens. 

In the end, most local folks I’ve met since 2020, I met online first. A lot of them I still haven’t crossed paths with in real life. It’s bittersweet, but sometimes I’m relieved they knew me online first. It let me have a first impression without my disability taking centre stage, even though I’m really quite open about it. I guess in a way, I didn’t quite closet myself, but got rid of any indicators that I thought would bring about unconscious bias. 

Boy, though, did it pay off. In the pandemic, I thrived. I kicked off a freelance writing side hustle, and wrote articles for a variety of publications on the regular. I released two EPs, as well as commissioned work and collaborations with theatres, festivals, and other creative projects. I worked with Penelope Scott, I performed at Vancouver Pride, and I did it all as my authentic, creative, neurodivergent self. 

Of course, nothing lasts forever. And it’d be really nice to give a handshake or hug to some of the people I owe my creative journey to. Despite the advantages the online world has given me, I promise, I’m just as tired of this pandemic as everyone else. It just so happens my creative journey benefitted from what changes this all brought about. 

Whenever the world goes back to normal - hopefully sooner than later - what I’m happy about is that I’ve already taken my first step. When I did, I had boundless energy, control over how I was perceived, and the chance to evade any subconscious ableist biases. Whatever my next steps are, what matters is that I’m already walking. People in the scene already know me, so I don’t have to dread first impressions as often anymore. 

Sure, I’m not exactly overjoyed to go back to the noisy, exhausting “real world,” but it’s nothing I haven’t handled before. In fact, I’ve seen this pandemic make people turn heads and actually care about accessibility, so the world we’re moving towards might be better for people like me. They’ve learned the importance of captions, of taking breaks, of offering remote options for events. They understand that some days, people are too burnt out to want to appear on camera. Whatever our “new normal” looks like, I have a feeling these takeaways on inclusivity aren’t going anywhere anytime soon. 

Besides that, I’m leaving this pandemic a stronger person. I’m on antidepressants, I have a therapist, and I also have a really wonderful support system of friends and family to fall back on - and some of them are in the very scene I’m proud to say I’m now a part of! 

Being able to break into the arts virtually gave me the start I’d needed for so long. Now, I’ve been awakened to my full potential, and I know others have, too. I never wanted to hide my disability - again, I was always quite open about it - but now that I have the connections and platform I do, I want people to know that if they related to my neurodivergent experiences, they shouldn’t have to feel bad. Whether it’s worrying how you come off to neurotypicals or quietly enjoying the Zoom world because it’s more accessible, there shouldn’t be shame. 

I really do hope that this pandemic’s taught people to be more accepting of those with different needs and behaviours. I hope captions at events become more commonplace, I hope online and hybrid events continue to happen for those who can’t make it to their in-person equivalents, I hope there’s less judgement around acting a certain way. 

We’ve all more or less been through a traumatic event together, and I hope that’s brought awareness to the spectrum of needs people have and how much more critical meeting those needs become in stressful times. I hope that those of us who found solace in cyberspace are given patience and respect, rather than being dismissed as a weird little minority. If you benefitted from not having to transit out for some distant event, or from having captions on something, or just being able to turn off your camera because you didn’t have the energy to smile through a whole Zoom call, you’re one of us. 

Again, I don’t want the socially-distanced digital world to remain our only reality. But hey, when we get out of here, let’s leave the judgement behind and work on accessibility and all the wonderful ways that can look.

About the Author

Alex Masse, AKA Fairything, is a writer, musician, and student residing in what is colonially known as Vancouver, BC. The arts are a longtime love of theirs, and their work has been seen everywhere from the Scholastic Writing Awards to Vancouver Pride, as well as in collaboration with Penelope Scott, She Does The City, Broadway Records artists, and more. They’re also a neurodivergent nonbinary lesbian, which greatly affects their process.

When not writing, they’re making music, and when not making music, they’re writing. Occasionally though, they can be seen working on their Communication degree or cozied up with a good book. Follow their creative journey on Instagram, where they're @itsfairything, or tune in on Spotify, where they're just Fairything, or check out their portfolio website, https://alexkmasse.ca/.

Explore Possible

This blog post is part of Explore Possible, an initiative by Manitoba Possible to amplify stories, perspectives about disability, accessibility, and inclusion.

Read more at manitobapossible.ca/explore-possible or continue on to our latest posts by clicking the titles and arrows in the bottom corners!

Imagine waking up one morning and not being able to get out of bed. Fast forward a couple of months and you still haven't found any relief from your pain. You are not able to do all the things you once could, in fact, you can barely cope with daily life. You get tired of the sympathy looks, their pity, so you stop telling people how you really feel when they ask. I'm OK, is all you say. Doctors brush aside your concerns. It'll get better, there's nothing we can do, take a muscle relaxant. Your bloodwork is clear, nothing is wrong with you. You even start to doubt yourself. Maybe it isn't as bad as you think it is. But something is wrong, very wrong. 

Your hands start to turn blue occasionally, your lips too. You start to wear lipstick so no one sees your blue lips, so no one worries. You isolate yourself from others because you want to shield them from your suffering. You choose not to participate in normal activities because you don't want to ask others to make accommodations for you. You lose so much weight, and people praise you, wishing they could lose weight too. Not like this, you think. You are in pain from the moment you wake up to the moment you go to sleep. Painkillers only provide enough relief to barely function. You are tired even with a full night’s rest. You need to balance activities with rest so you don't become burnt out, stuck in bed all day to recover. 

And no one can see it. No one understands. 

People look at you like you are speaking a foreign language when you talk about your experience. Their eyes glaze over, and they nod robotically, eager to change the topic of conversation. For most people I meet, my experience is one they’ve never encountered before. They have no prior knowledge of an invisible chronic illness, and no shared life experience they can pipe in with. For those who know of people who suffer from these types of illnesses, conversations revolve around how their sisters’ friends cousins got better with a magic diet, with yoga, by holding their nose and standing on one leg. These people are well-meaning, and I understand the need to help fix the problem. Heck, I’ve been that person to offer unsolicited advice. However, my disability is not something to fix; rather it is part of my identity.

My Disability is Part of Who I am

Disability, in whatever form it takes, makes most people uncomfortable. In our society, there is a common theme of ableism, which Merriam-Webster defines as the discrimination or prejudice against individuals with disabilities. I much prefer Rebekah Taussig’s definition of ableism as identified in her book “Sitting Pretty”. She defines ableism as “the process of favouring, fetishizing, and building the world around a mostly imagined, idealized body while discriminating against those bodies perceived to move, see, hear, process, operate, look or need differently from that vision.” 

When there is something wrong, we want to fix it. The problem with disability is that we see it as wrong. That person is less than or defective because of their disability, and as such, are not considered a fully functioning member of society. This idea is so prevalent, even people with disabilities grow up with an internalized ableism, making them feel less than compared to their non-disabled counterparts.

Unfortunately, our society doesn't want to accommodate people with disabilities. That would mean that we would need to live with the uncomfortable truth that overnight a healthy 27-year-old can suddenly have the mobility of an arthritic 89-year-old. With no known cure. No magic pills.

I have a unique perspective in that I understand what it is like to be both non-disabled and disabled.  But I still have that internalized ableism that tells me because I have a disability, I can no longer enjoy life the way I used to. This idea is wrong on all accounts. In a society that tells us we are not good enough, we need to challenge that by focusing on what we are good at, what we can do. 

And you may be reading this article and be thinking “I’m not disabled, this doesn’t affect me”. I would like to take the opportunity to gently remind you that anyone can become disabled at any time. You may be diagnosed with a chronic illness; you might lose your sight or hearing. You might lose your mobility in an accident. Being disabled is not a personal failure. Non-disabled people are not inherently better than disabled people, although our society mistakenly implies that they are. 

If you are new to Ableism, I would recommend you listen to this podcast by Arthritis Life, where the host Cheryl discusses Ableism with guest Lene Anderson. 

Your Struggle is Real

I struggled for months with doctors who told me that the pain would go away - but it might come back! They told me I should exercise to reduce my pain – we don’t want you taking those pain killers! They stopped short of telling me it was all in my head. But every trip to the doctor where they would tell me my bloodwork was normal and there was nothing wrong with me, I began to seriously doubt my experience. Was it really as bad as I thought it was? Spoiler, it was. 

If you are in this boat, I’m sorry to say my friend you have been blessed with a battle. You will have to fight for yourself or have a trusted friend or family member to fight on your behalf. If you let it go, the medical professional will do nothing. They will not lose sleep while you lose months, even years of your life. If your medical professional is not taking your concerns seriously, ask for a second opinion. Change practitioners if need be. You are now your own advocate.

What you’re going through is real. Yes, it is impacting your life. And yes, if it is invisible, there may be people around you who don’t believe you or don’t understand. 

Not everyone will, and that’s OK. It’s OK to distance yourself from these people. It’s OK to lean on the people who are empathetic and understand what you’re going through.

Find a Community

When I was diagnosed with an autoimmune disease I was living away from my family. I hated having to tell people that I was struggling. I hated myself for the fact that I was sick and I wasn’t getting better. I hated my blue hands and lips that made myself and others around me uncomfortable. I hated that my disability required other people to accommodate me. 

So, I started lying. I told them I was OK. I wore lipstick to cover up my sometimes-blue lips. I cut myself off and spent most of my time alone. 

One day I was scrolling Instagram and I saw a post about autoimmune diseases and invisible chronic illness. I soon discovered a community full of people with shared experiences. I had been faltering, trying to cope with my disability, and this shared experience, even through a screen, was a lifeline that I could cling to. There were people who shared my struggle! I wasn’t alone! I recommend surrounding yourself with people who understand, or better yet, people with lived experience of your disability. 

Inquire about support groups in your area or follow individuals with your shared experience on social media. And if there is no one you can talk to,  journaling or therapy may be able to help you process the tough emotions living with any disability brings. Humour is something else I use to help me cope with my experience. I figure you can laugh or cry about it. Sometimes you might need both, but I’d prefer to laugh.

”Starting Spreading the News…”

My advice is talk about it. Whether this is a new thing or something that you have been living with since birth, there is still the process of coming to terms of how this disability impacts your life. I’m not saying that you must share your own experience. You do not owe anyone an explanation, nor do you exist to inspire others. If your disability is invisible, you have the privilege to hide it from others. That being said, there are supports that can make your life with a disability easier. 

Even if you choose not to share about your experience, disability awareness is still incredibly important. Disability comes in all forms, and it exists even when it doesn’t ‘look’ like we think it should. I began to advocate for disability awareness in my own small sphere of influence. I started an Instagram page, @exhaustedbyliving, to share my struggle and let others like me know they weren’t alone. I also advocate for disability awareness through posts on my private Instagram and Facebook pages. 

Society tells us that being disabled is wrong, and there is a shame associated with that. Together we have the power to change the rhetoric. If we talk about disability, we are letting others know that it is ‘normal’ and meant to be celebrated rather than covered up. Together we can work toward ending the stigma associated with disability. 

About the Author

In 2019 Kathryn D was diagnosed with an autoimmune disease. One morning she woke up and couldn’t get out of bed, going from non-disabled to disabled overnight. Through her diagnosis, she strives to help others who are trying to cope with a disability that most people can't see or understand, including health professionals and loved ones. This is a battle, and she believes no one should fight alone. Among other things she loves going on adventures, enjoying good food, and reading.

Explore Possible

This blog post is part of Explore Possible, an initiative by Manitoba Possible to amplify stories, perspectives about disability, accessibility, and inclusion.

Read more at manitobapossible.ca/explore-possible or continue on to our latest posts by clicking the titles and arrows in the bottom corners!

In March 2009, I was accepted into the Creative Communications program at RRC Polytech (formerly Red River College). After six previous attempts over 13 years, I could pursue my dream career as a broadcast journalist.

But I kept my focal onset seizures and history of adolescent brain tumours secret from the instructors and Creative Communications coordinator. I believed my seizures – that I’ve had since 1991 – would be viewed as a flaw and weakness. Media is competitive, and the competition kicks off the moment you step into RRC. I didn’t want the other students to view me as a punchline or incapable. But - like them - I earned my spot. I wrote the Creative Communications admissions exam a week after a seizure. With two minutes left, I handed in the exam. I still had to prove I belonged.  

Someone Should Know Your Story

While it worked in my favour and the focal onset seizures were on hiatus, someone should know about your seizures. At college, I told a handful of trusted friends about my history, but not my fears. I pretended the past didn't affect my present and wouldn't impact my future.

You need a support system when you’re overloaded with work and your brain is spinning with worry. There are campus counsellors who will provide you with a sense of calm in the storm.  

It’s also important for your friends and co-workers to be aware. Before I left my job to enter Red River College, I had a seizure and I couldn’t come to work for three days. Prior to that seizure, my employer and co-workers didn’t know about my seizures. They were supportive and caring. My human resources person asked me, “What can we do to support you?” They didn’t outcast me, and they wanted to learn about my seizures. 

But I wish I had carried that lesson into college. Because you’re not different. That’s my hindsight, and I hope someone takes this as their foresight.

School was stressful - but I thought I was lucky. My annual neurology appointments were during the summer, and I didn’t have to miss school. I was pushing myself to the max. Spending twelve to fourteen plus hours at school or on assignment, staring at computer screens or in edit suites. I lined up interviews and met deadlines. My first stand-up took 45 minutes to shoot, and my instructor chose mine as the best one. Happiness turned to terror because I had to sustain that standard.

I needed a support system but I was too afraid to reach out, even to a friend. I feared if I spoke to anyone my vulnerabilities could be seen as a weakness. 

Not having that support system came at a cost. With my brain being set on high stress for so long, it wasn’t used to a lower gear. Two weeks after I left college, I was a reporter at a small paper 45-minutes outside Winnipeg. Thrilling, because it was the same one national Global News anchor, Donna Friesen, started her career.

However, on what should’ve been my second day, I had a focal onset seizure before I left home. I was grateful I hadn’t left home, but I dreaded calling my boss. And my instincts were right because he didn’t believe me. He thought this was an excuse and said my reference didn’t say I had seizures. When I told him I would be losing my driver’s licence – protocol in Manitoba – he wanted proof.

Then an ambulance took me to the hospital.

That was two weeks before convocation. Despite everything, I consider my diploma and Red River College alumni pin an accomplishment. It took 13 years and seven tries for this piece of paper. And I was determined, seizures or no seizures, to be an on-air reporter. I’d show them. I just didn’t know who “them” was.

Secrets Either Make Or Break You

In September, I accepted a 10-month contract with Shaw TV Edmonton. But I had to send Shaw a photocopy of my licence, which I'd already sequestered. My other concern was whether my previous medical suspensions be on my abstract. I didn’t have a licence, just an ID card. I called an instructor, and she said, “If they ask, it’s none of their business.” Luckily, they never asked and I moved to Edmonton.

I did a story to promote the Brain Tumour Foundation of Canada’s Spring Sprint (now Brain Tumour Walk) and their Edmonton promotions person asked if I’d like to emcee. Partly excited, partly terrified, I accepted. Do I admit I’m a two-time brain tumour survivor? At the Spring Sprint, I probably squished the mic as I told the audience I was a brain tumour survivor. They clapped, and I joked, “Trust me, that wasn’t my parent’s reaction when they found out.” 

News travels fast and the next day in the newsroom one of the reporters said, “I didn’t know you had brain surgery. I never would’ve known.” That comment is one of the reasons some people don’t disclose their brain tumours. We fear judgement and the stigma. What should someone who had a brain tumour – and/or epilepsy and seizures look like?

We need to erase our preconceived notions of invisible diseases. These days, I’m open about my epilepsy. During my 40th blogging birthday challenge, I unexpectedly stayed at the Health Science Centre’s Epilepsy Monitoring Unit. I posted photos of myself with 37 nodules on my head and reviews about the food. I even shared a short video after a seizure. In 2016, I became a Purple Day Epilepsy Ambassador for the Anita Kaufmann Foundation. 

If people with epilepsy, brain tumours and/or seizures want change, we need to lead the way. We need to educate others to make change. For example, the media requires applicants to have a licence. Not everyone with epilepsy and seizures holds a licence. It’s a Catch-22. You have the skills, but you can’t apply for the job because you don’t have a piece of laminated plastic.

My advice: apply to those jobs. You should be judged on your worth, skills, and determination. 

When you are aiming for your dream career, you can feel invisible and alone withholding a secret. But, I encourage you to talk to the faculty or a counsellor. Be open with someone about your epilepsy or brain tumour – or any invisible disease. They can provide a safe haven where you can cope. Tell someone you’re close to at your schools, workplaces, groups and communities.

How Do We Erase The Stigma?

We can start with education and awareness. 

When some people hear “epilepsy,” they may think of tonic-clonic seizures - formerly grand mal from television. Tonic clonic seizures are a sliver of what our disease encompasses. Focal, absence, PNES, myoclonic. Plus there are over 130 types of brain tumours, both of mine were different classifications. 

According to the Canadian Best Practices Portal, epilepsy is the third most common neurological disease in Canada. However, epilepsy and seizures receive a low amount of media attention. The more we discuss seizures and brain tumours, the less we’ll fear them. One in ten Canadians will have a seizure in their lifetime, and 27 people in Canada are diagnosed with a brain tumour every day. 

Sometimes people with epilepsy and seizures feel lonely and isolated from society. Purple is the colour of loneliness. On March 26th, an awareness campaign called Purple Day encourages people to wear purple and open a discussion around seizures. The hope is to destigmatize the disease.

If my instructors or coordinator knew about my seizures, my Creative Communications experience could’ve been different. Maybe an instructor would’ve told security to check on the person in the radio booth or edit suite every hour. Maybe when the instructors would send journalism students to gather interviews, they would’ve asked where I planned to go. In the media industry, your assignment editor sends you to cover certain stories. They know where you are, so why shouldn’t instructors?  

But I chose to live in panic mode. 

Today, I talk freely about living with epilepsy and my history with brain tumours. My life changed overnight and seizures will impact the rest of my life. When you share your story, sometimes you’re helping others who are struggling. Sometimes you’re helping a person in the same situation as you.   

Because everyone has a story.  

About the Author

Tammy Karatchuk is a freelance reporter, author, blogger, actor, model, and competitive skater in Winnipeg, Manitoba, originally from Arborg, Manitoba. She holds a Creative Communications diploma, majoring in journalism, from RRC Polytech. 

She’s worked with Shaw TV Edmonton, the Edmonton Journal (freelance figure skating and football reporter), 680 CJOB, ChrisD.ca, and Interlake Publishing. 

Explore Possible

This blog post is part of Explore Possible, an initiative by Manitoba Possible to amplify stories, perspectives about disability, accessibility, and inclusion.

Read more at manitobapossible.ca/explore-possible or continue on to our latest posts by clicking the titles and arrows in the bottom corners!

Who do you become when the world tells you you're different? When the barriers you face daily feel like chains to an indifferent society or another unachievable standard?

These are questions I had to ask to let go of the person the world told me to be and step into the person I am.

I was diagnosed with Attention Deficit Hyperactive Disorder (ADHD) and Anxiety when I was 19 years old. Like many women in my generation, we are the Lost Girls (Faulkner, 2020). The ones who weren't loud enough to raise the alarm bells or maybe too loud, making others uncomfortable. I was told to focus on extracurriculars and let go of the notion I could excel in school. Further, I was warned to accept my fate; that if I was lucky I would live an ‘average life’. Before I can even remember, the world told me to concentrate on surviving, no one ever really asked me what I would need to thrive.

I watched those around me complete small tasks with ease, tasks that would overwhelm me. My friends viewed my life as chaotic and unruly and I remember spending too much precious time trying to prove them wrong. Despite my best efforts though, year after year, I watched every academic or school-related milestone slip away.

Despite the gnawing feelings of inadequacy, I would show up to support my friends as they claimed their elevated place in those halls, just smaller, and more doubtful of myself each time.

I knew my brain worked differently. When faced with these challenges I would express a tsunami of frustration that I couldn’t manage things that should be commonplace. I wondered why I couldn’t sit at my desk for 8 hours a day, why I struggled to regulate my emotions, why I couldn’t control my impulsivity. 

When I look back now I can see how unattainable my academic goals were given the circumstances. But perseverance is central to who I am and so instead of heeding the calls to give up, I tried harder to be the  ‘perfect student’, I was left drained, defeated and demoralized.

"I think you should let go of making the honour roll, Alexandra. It's unlikely you'll ever be that bright.” This was the advice of those closest to me, to let go. But it felt like they didn’t understand, or worse, they thought I was making excuses for bad behaviour. Tutors, guidance counsellors, after-school study hall, office hours, I did it all, and was left screaming into a void wondering what could possibly be done? It wasn't until my brother was encouraged to get assessed that anyone clued into the tornado that had been living in my head over those 19 years.

A diagnosis isn't everything, but for me it was. Despite the difficult process, it was where my real becoming began.

Unbecoming

To get to the journey of becoming, I had to first undergo the process of unbecoming; what I called my unravelling. I had to rid myself of all the ways society conditioned me to fit their template.

I love the word unbecoming because it has so many different meanings. It is the opposite of conformity, it means improper, indecorous, not fitting, conflicting with accepted standards of good conduct, or my favourite iteration, not becoming. I was afraid I’d be too much for the world around me that I actually stifled my becoming.

If 19 years of trying to fit into a society that didn’t seem to want me taught me anything, it was that fitting in wasn’t enough. I wanted to belong. It also taught me that real belonging meant being “improper”, disrupting the idea that me, or people like me, weren’t enough the way we are. 

I love working in the human rights space now, especially for those with disabilities. And this space can also be fundamentally unbecoming because it demands we challenge the status quo. Disability rights advocates ask us to envision a different, divergent society, a more inclusive and just one. Advocacy, too, requires an unravelling of the way we’ve been taught to view those with learning disabilities-- that we’re given handouts, we get special attention, or my most common, that ADHD isn’t real. All of that rhetoric has to be disrupted before we can create safe spaces to succeed.

After months of grappling with my diagnosis, navigating the archaic disability services in my university, convincing myself I was worthy of support, and gaining the confidence I needed to show up exactly as I am, I flourished. I achieved things my younger self would’ve never thought possible.

My first semester with accommodations landed me on the university's Dean’s List.

The email read, “The Dean’s List is awarded to those for academic excellence. Congratulations, Alexandra”. I sat in disbelief, reading and re-reading every word of that email until I could recite it by heart.

The path of unbelonging was often relentless, consuming and heartbreaking, but the path of unbecoming was powerful, righteous and justified.

Becoming

I lived so long worried that who I would become might be unwelcomed by the world but the years following my diagnosis changed everything.

The change didn’t come just from a piece of paper though, it was the confidence naturally blossoming from finally understanding who I was. It was the ability to understand and learn about how my brain functioned, and it felt like an awakening. 

I sought out people like me, scholars, CEOs, artists and poets, those who openly shared stories of their success. Almost all of them were disruptors. They made me feel seen and they were people I couldn’t help but aspire to be. I found a deep love and passion for the field of social work-- not simply the study of people but how they act and react to their environments. I was also consumed by the bigger picture, the structures that create division and then more broadly, the need for societal change. This new awareness and appreciation of neurodivergence allowed me to invest my energy into the beautiful ways my brain worked instead of loathing the ways it didn’t.

And still, to this day, I believe learning and unlearning behaviour is a natural part of life. It is a continuous process and an agreement we make with ourselves in order to grow. Learning how to disrupt a faulty system for myself inevitably led to a career where I advocate for a wide array of human rights, and on a national scale. I am grateful every day that I get to wake up and fight for a more vibrant, rich and inclusive country. 

So far, I’ve worked alongside policymakers, politicians, humanitarians, and global figures. I have the privilege of working alongside Canada’s social workers, so many of whom are doing some of the most ground-breaking anti-oppressive, world-healing work I have ever seen. And there isn’t a day that goes by where I don’t witness firsthand the beauty and pain this world has to offer.

I embraced my creativity and fast-paced nature. I took risks and I got really loud for causes that matter. I got clear on what I needed to succeed, and I was unapologetic in my endeavour to step up or step back when fighting for social change. And in the six short years since my diagnosis, I have worked with amazing people to advance lifesaving legislation, while pushing for larger adoption of human rights frameworks. It’s a mouthful, but each win we celebrate makes me more honoured and humbled by our work to make Canada the best place in the world for everyone.

I could have gone down a different path. Individuals with ADHD are at a higher risk for eating disorders, problematic substance use, incarceration and suicide. Outcomes are worse for those who are undiagnosed with comorbidities or those without access to vital supports. Government assistance for folks with disabilities is often meagre and social supports are systemically viewed as charity instead of the constitutional rights they are. We have a long way still to go but I am encouraged and hopeful by what I have seen as of late. It is empowering to be surrounded by people dismantling systems meant to encourage conformity over creativity.

For so long, I was told that fitting in would be my best shot at a decent life. Now I want to be as unapologetic and disruptive as possible.

So I hope you join me in the process of becoming. I hope you are unbecoming in your pursuit of social justice. I hope you stand up for one another or for yourself when you are in the arena alone. I hope you celebrate diversity and hold space for those who walk, talk or think differently than you do. I hope you know that you matter, and so do your stories of success or of strife. 

I know we are capable of finding beauty over alarm when confronted with different ways of knowing and being. And I know we need to do much better in creating spaces to honour and celebrate diversity in every form. 

I will end by saying that the brilliance and determination I have seen firsthand from the disability community is awe-inspiring, remarkable and visionary. I am proud to be a part of it, and I hope there comes a day when young women like me don’t ever think they don’t belong.

About the Author

Alexandra Maine is a social worker living on Unceded Algonquin territory known as Ottawa. After studying social work in the nation's capital, Alexandra decided to stay and pursue a career working in federal policy, aiming to ensure everyone in Canada has access to basic human rights. When not reading or writing, Alexandra enjoys spending time in nature with friends and family. 

Explore Possible

This blog post is part of Explore Possible, an initiative by Manitoba Possible to amplify stories, perspectives about disability, accessibility, and inclusion.

Read more at manitobapossible.ca/explore-possible or continue on to our latest posts by clicking the titles and arrows in the bottom corners!

The fall of 2019 marked a huge life transition.  I was ready to move to a new city again. It was my first experience looking for an apartment and I quickly came to know the complex and irritating process of trying to live independently as a disabled person. I was a 31-year-old woman with Cerebral Palsy who lived across the country from family and friends while trying to build new friendships in my neighbourhood, get a job and integrate myself as a leader in a new church community. Phew! And then the pandemic?!   

The process of scouring the internet for rental ads, contacting agencies and potential supports in hopes to find advocacy can be discouraging. Persons with disabilities have to be prepared for many roadblocks and yet build an inner resolve to keep understanding the processes and barriers. They need to shine the light and share their daily realities.  The low-income option waiting lists are long. 

Many hours will be spent on the phone, typing emails,  explaining specific needs and being flexible for appointments. Even the appointments to view potential spaces are few and far between. Some houses could work if they had a few adaptations and a patient, innovative landlord.  Most housing spaces have way too many stairs and have limited space.  It will take perseverance to keep hoping that somehow, a homeowner would be understanding. You may even have moments of wishing for the possibility that the ear on the other end of the phone would continue the conversation after the “I have a disability” part. It’s a relief to find people who will listen rather than just thinking that it couldn’t work or people who are willing to think of ways to make spacious, accessible homes in the community.

People with disabilities want to live, make a home, and thrive.  We all bring a unique and personal journey of what it means to experience life.  It takes courage to talk about these things and it is so important. Isolation and powerlessness can dissipate when we find that there are people with similar experiences and people who see them and understand.  It can be helpful even before entering these conversations to: 

1) Make space in your day to rest from the search

Go outside, make that appointment with a therapist or spiritual director, laugh and play.  It is helpful to engage in meditative prayer, write, sing or dance to music. The housing process can be very stressful and so taking rest and having fun is important for your health.

2) Learn and let out the anger

Do the research on what disability agencies can help.  Some do not have housing as part of their programming and some are unable to help you until you have an address in their serviced region. Many landlords don’t think or have never thought about accessible housing.  Learning these things and acknowledging them ahead of time make facing these barriers a little bit easier.  Anger and saying out loud “This is not fair!” from every side of the conversation will help externalize the ‘this is not okay” feeling and will move us into action and development in ways that will benefit all members of communities.

3) Gather your people

Trusting 2-3 people who empathize, hear you and check in will be valuable even before initiating these brave conversations.

Let’s continue on and explore some of the real conversations that people with disabilities may have in looking for housing. As you read, my hope is that whether you move through life on wheels or heels, if we share our experiences it could make finding housing easier - TOGETHER. 

What does taking action mean?

Have a Conversation

Homeowners and landlords, when a disabled person makes contact about your available space, take time to hear what they are saying. I understand the urgency of wanting to rent or even the frustration of getting a phone call when it’s inconvenient, but the search for housing would be easier if a call wasn’t rushed through or ended with an abrupt “No!”

Own Your Needs

Don’t let the inner barriers of fear and shame that pop up internally stop you from having these conversations.  Speak to the specific physical needs regardless of if renters can accommodate or not. The value of living life barrier-free helps us all flourish in our communities and cities.  It is helpful to make a need/want list as calls are made, applications are filled and rental spaces are viewed.

Make Noise

This does not mean literal shouting on the street necessarily, but facing the honest truth about accessible housing in Manitoba is discouraging and hard!   It's time to talk about building houses/ structures that are completely accessible. It’s time to embrace universal design. It is time to speak up, educate and have a strong voice in communities and spheres of influence. It is time to ask landlords to put working buttons on their entry doors and look into accessibility features.  There are many things to consider like the height of counters, grab bars in washrooms, spacious hallways and room for wheeling around corners.  Something as simple as, wide elevators,  handles instead of doorknobs, keyless and street-level entrances are all things that make life easier.  It is also helpful to read a rental ad that clearly states whether or not the place could accommodate a person with a disability. Perhaps maybe even starting small by asking homeowners and landlords to shovel sidewalks and entrances in winter? This is the accessibility that benefits everyone. Let’s advocate for ourselves and one another.  

Ease the Burden

Throughout the housing search, asking those few friends to help you make calls, face the staircases with you,  listen and drive you around to different places can alleviate pressure. This helps so much. It stirs up the courage to ask for needs from landlords, initiates different ways of thinking and innovation on potential places that could work. Friendships that hear, protect, stand and empower you ( at the right times and in dignifying ways) are a gift to lean into.

So Accessible Housing...

A  house may not have ramps, elevators or corners where turns are easy. It is true that the world may not always fully understand how much the same threads of belonging, connection and friendship are at the core of every human— disabled or not. As this article is read through I hope it sparks a movement. I hope it sparkes friendship and advocacy. I hope it sparkes flames that bring light into places that are often hidden or ignored. Then may it spark change, new stories, validation of voices, rebuilt homes and places of life for everyone.

May we be learners and not ignorers

May we open our eyes and turn towards the hard things

May we be friends who together act in ways to make places and spaces accessible

About the Author

Deanna is a disabled woman with a Bachelor of Theology. She has over 10 years of experience engaging youth and families that are considered to be at-risk/ marginalized in the Maritimes and in Manitoba. She is passionate about how disabled people are welcomed into social and faith communities. She is a mentor, listener and friend to those who have lived experiences of suffering. Deanna has worked /volunteered for several non-profit organizations, facilitated small groups and given her voice to church,  community,  and social media platforms. She loves the ocean, coffee,  laughing, singing, baking, reading, writing, shedding messy tears over a sappy movie or in moments of prayer.   She just finished training to become a Spiritual Director and is discovering and finding a home in the multicultural community of Winnipeg's West End. She is also finding great joy pastoring in a new church community there called West End Abbey.

“What does she need a service dog for?”

As I walk across the graduation stage with my service dog Barkley (who I might also add is wearing the same matching gown and cap as myself), applause fills the air. Over the years I spent at university, it wasn’t uncommon for people to know Barkley’s name and forget my own. This never bothered me though, as I took it as a sign that people were not only noticing him but considered him a part of campus just like everyone else.

However, later as I was driving home from the graduation with my parents, they mentioned to me that someone behind them in the ceremony had remarked, “What does she need a service dog for? She can see.” As they made the comment, I could imagine that they would have never thought, amongst the hundreds of people in this crowded hall, that my parents would be standing right in front of them. My parents, much like myself, never took offence, as it wasn’t an uncommon question or statement to be directed my way over our years of partnership. Even today, some people still aren’t aware of the wide variety of reasons a person might be partnered with a service dog, for example, autism assistance, diabetic alert, guide, hearing, mobility assistance, psychiatric service, seizure alert, severe allergy alert, and wheelchair assistance.

A New Friend

I was first partnered with Barkley back in 2011, after a tumultuous few years of struggling with OCD, depression and anxiety, which had completely flipped my life upside down. Along with spending time as an inpatient in a hospital, I also had to take a year off school (something completely devastating to me as one always dedicated to academics). It was difficult for me to keep friends and most distressing; I was having troubling thoughts in my head that had me questioning everything I knew about myself. My concentration was so poor at the time that it was hard for me, even as an avid reader, to pick up a book or watch TV. I had gone from a very high-achieving and involved person to someone that could barely make it through the day.

After a couple of years of working collaboratively with a doctor, who was able to find the right combination of medications for me, as well as receiving therapy, learning new coping strategies (something I embarked on with the same high-achieving nature I approached school) and being lucky enough to have the unwavering support of my family, I was starting to feel like myself again. I would argue a better version of myself as I now had embedded coping strategies and a new way of looking at the world. But I still felt like something was missing.

Having been an active horseback rider throughout my childhood and teenage years, as well as a lifelong lover of animals, I became interested in service dogs. After learning about the role that service dogs could play in the lives of those struggling with mental illness, I thought that this could perhaps be the missing part of my recovery puzzle. Unfortunately, in Canada, since there is not a non-profit organization that partners service dogs with those who have a mental illness (unless you’re a veteran), I had to pay out of pocket for Barkley. Knowing that this is something that not everyone has access to financially, I was and still am incredibly grateful for his partnership.  

So what’s the difference between Emotional Support/Therapy Dogs and Service Dogs?

Service dogs are different from Emotional Support Animals and Therapy Dogs because they are trained in specific disability-related tasks to work with one individual person. Although therapy dogs and emotional support dogs provide comfort and companionship to many, they are not granted the same access rights as Service Dogs. Knowing the distinction between these types of working dogs is essential, in order to continue to properly advance the rights and privileges for humans partnered with Service Dogs. It is also essential that people do not try to pass their ‘pet’ dog as a Service Dog. Even though you think you might not be doing any harm, it makes it very difficult for the certified Service Dogs who follow you.

As a personal experience, in one instance I went into a store, where the Manager stated that I was not allowed in. When I explained, as I had many times before, that Barkley was a Service Dog, she told me that they had recently had a ‘Service Dog’ in their store that bit someone, so they were no longer allowing any dogs into their store. This is a very clear example of someone whose ‘pet’ dog was brought into the store, limiting my access to the store when I arrived later. Even though you may think that it’s “no big deal” or that “your dog is very well-trained anyways”, it severely hinders the progress that Service Dog teams have worked so hard to make. Additionally, if you see a Service Dog out in public, it’s important to not distract them from their work in any way, as it could lead to dangerous consequences for the team and takes the Service Dog’s focus off their human partner. Barkley was once fed a piece of a submarine sandwich while he was working, which as you can imagine is a big no-no and also could have left him sick if he was allergic to any of the ingredients.

During our year of training together, Barkley was specifically tasked with learning how to provide deep pressure therapy, tactile grounding, alert in instances where my anxiety was rising and provided me with a constant in the sense that I knew no matter where I went, Barkley would be by my side. I was so excited when I was able to bring him home in January of 2012.

Although Barkley is now living his well-earned retirement, during his ten years of service (the average working time of most service dogs), he saw me through an array of experiences including my undergraduate and master’s degrees, dating, travel, various jobs, and everything in between. In fact, he was even at my wedding!

As I think back to the applause that erupted as Barkley and I walked across the graduation stage in 2015, I can’t help but think of it as a testament to the number of people he has crossed paths with (many who have their own personal stories of their interactions with Barkley). One thing I know for sure is that I’m so glad his path crossed mine.

About the Author

Devon holds a Master of Arts in Critical Disability Studies and spent many years of her education and beyond studying the role of service dogs for those with mental illness and the ethical implications of service dog work, which was recently published in the Canadian Journal of Disability Studies. Along with being an avid service dog and mental health advocate, Devon is now a Communications Coordinator with the Canadian Mental Health Association. In her spare time, Devon can often be found sipping tea and reading a good book. To learn more about Devon visit www.devonmayor.com. 

About Barkley

Barkley is a Standard Poodle who is currently eleven years old. Although Barkley is now retired, he held the role of Devon’s service dog for ten years. Barkley enjoys spending time on the couch with his humans, treats and going for long walks.

Explore Possible

This blog post is part of Explore Possible, an initiative by Manitoba Possible to amplify stories, perspectives about disability, accessibility, and inclusion.

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An Introduction to Autism

Autism is a fairly common developmental disability that occurs in people of all ages. Even I have it! A well known coping mechanism among people with autism is masking. Masking, to put it simply, is an effective way of hiding your neurodivergent symptoms when among others. Let’s consider stimming, for example. Stimming is a way to let out energy, and using masking to suppress that urge is, well, tiresome to say the least. For me, I stim through shaking my hands or pressing my fist into my face. This helps me shake off all the built up energy. Shaking your hands is one of the most common ones, but there are many other ways to do it. 

So, what’s the big issue with masking? Masking your symptoms can be very dangerous, and not just physically. Masking has, in a myriad of ways, negatively impacted my life. I started to mask once I got into kindergarten. I knew I had to once I started to receive negative responses from peers after stimming or expressing my special interests. As I grew older, I was surrounded by the negative stereotypes of an autistic person because of social media. The “r slur” was being used like the class sharpener.  Everyone would use it. Here are some of the many issues I’ve struggled with from masking my symptoms at work, school, and home. 

Why Do We Mask?

I often mask to protect myself from the outside world. Whether it be masking my stimming or masking my trouble with maintaining eye contact, it helps protect me from being attacked just for being different. 

Bullying, self-image, and avoiding negative attention are just some of the reasons why I, and many others, choose to mask.

Depression

Yup, something that seems so commonplace can be extremely life-altering. Depression can be caused by many different factors in someone’s life. My depression started up in June of 2020. I felt like nobody loved me. Because of my recent diagnosis of autism, I was still coming to terms with the fact that I was different. It hurt a lot. So, I resorted to hiding it, even at home. That’s what caused my depression. It is a mental illness that negatively impacts you both physically and mentally. Depression, one of the most known illnesses in the world, worsens your mood and may lead to suicidal thoughts or actions. 

What about masking causes depression? Masking your symptoms can be very draining. Constantly aiming to fit into the crowd causes you to think of yourself differently compared to others, leading to poor self-esteem and questioning self-worth. I went through this myself. So to put it simply, yes, autism may lead to symptoms or a diagnosis of depression.

Anxiety

I’ve struggled with anxiety since my early youth. I didn’t find out I had autism until I was thirteen, so I was always masking to fit in. This resulted in anxiety around the idea of people noticing how hard I was trying to fit in. 

What if they knew I was hiding my real self?

They probably aren’t interested in my hyper fixation.

Why do I talk so much?

Why am I different compared to the others?

Masking can cause severe anxiety because of the constant need to hide your true self.

Self Esteem

Once I found out I was autistic, my self-esteem dropped majorly. I no longer felt as though I was normal like everyone else. Self-esteem is the way you think about yourself. Do most people see me negatively? Am I good enough in their eyes? Thoughts like these can sprout from a mental illness. Low self-esteem can easily be caused by masking. Even when someone who is masking has a good reputation, they may feel like their real personality is not as adequate as the one they portray whilst masking, and this can easily lead to self-esteem issues. 

On the contrary, if a person who is masking is known to have some weird or quirky behaviours, they could feel as if they are not doing a good enough job at masking, or they have been “found out”.

Low Energy

It’s clear that masking is tiresome. I would hide my stims all day and try my best to hold eye contact, but it was torturous. I would be exhausted by maintaining the mask I felt I needed to wear. At the end of the day, I was basically left with no energy to do anything at all. Pretending to be someone else and suppressing my own feelings or needs is draining, and can make it difficult for me and others who mask to go to social events without needing to leave partway through the event.

Forming New Insecurities

I hate to say it, but for some people (like me), autism is their biggest insecurity. It’s why we mask, after all. When masking, you start to realize what you’re hiding. Your lack of social skills. Those so-called “weird” movements you make when you get excited or overwhelmed. But in truth, they are really nothing to be ashamed of. When we do notice these small things, they become one of our many insecurities. For example, as a child, many other kids would not understand my behaviours and point out stimming. I wish they wouldn’t have stared. Wouldn’t have commented or laughed. Wouldn’t have whispered in the other children’s ears. This can cause insecurity of stimming to arise and lead to more masking behaviours.

How do We Avoid the Consequences of Masking?

How have I avoided the consequences of masking? I’ve learned that I can still mask, but that there is no reason to be ashamed of my autism. But it’s not just about changing the way I think of my autism. Communicating with neurotypical people and letting them know how they can best support me has been helpful. And in turn, if you’re a neurotypical person, communicating with your autistic friends can really make them feel happier and included.

Moving Forward

Do you have autism or does someone you know have it? Seek out resources and learn all you can - also, checking in can be a great step towards social connection. It’s a good idea to be sure to check up on them from time to time.

Based on what you learned today, you now understand that masking can be very unsafe. Masking can negatively impact the lives of people with an autism disorder. Supporting your autistic friends, or yourself if you have autism, is an important first step you can make to better the lives of people with autism. I would appreciate it if my friends expressed their support through questions, research, and adapting. Some ways they have already helped is through keeping me away from unsafe situations (loud noises, bright lights, etc). Learning how to navigate masking has helped me embrace myself and appreciate how unique I am.

About the Author

Elliot Rose Barker is a Canadian writer based in Ontario. They have been writing professionally since April of 2021. With diagnosed autism and ADHD, Elliot is bringing awareness to these disabilities and providing others with the knowledge they need to thrive, regardless of their disability. 
Check out their website https://pickwicklit.ca/ or their Instagram @elliotrosebarker.

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This is a call for people with disabilities to participate and work in the health and wellness industry. We need disability represented in the fitness space. 

Why aren’t people with disabilities participating in yoga, Zumba, Pilates, and personal training? 

They might not believe that it’s within their capability. 

They don’t see other instructors with disabilities on YouTube, on Instagram, or in Pilates studios. 

They don’t believe that they can do it.

If you take a look at most wellness websites, you’ll see stock photos of slender and strong, non-disabled instructors doing intermediate exercises, reinforcing the idea that Pilates is only for people who are flexible and fit. Many people believe yoga, Pilates, Zumba and other forms of exercise are for people who are already flexible, strong, and athletic. This is a common assumption: many people believe that they’ll be unable to do Pilates because they’re inflexible or injured.

My Pilates Practice 

I started practising Pilates in 2008 at the recommendation of my massage therapist, who told me that massages were a waste of money if I didn’t exercise regularly. I didn’t like going to the gym, so Pilates became my primary form of exercise. 

My first career was as a books journalist and social media manager. I worked in Winnipeg, Toronto, and London, England for magazines and book publishers. The career was demanding and stressful. I was the first person to get into the office in the morning and the last one to leave. I was chained to the social media accounts every minute of the day. After a year in London, when my work visa expired, I moved home to Winnipeg, starting and losing a new job within six weeks. The day that I lost that job, I made the decision to close that chapter of my life and start a new career. I wasn’t sure what I would do, but I knew that I no longer wanted to work in an industry where I felt I could never measure up. 

The next day, I went to my Pilates class. My instructor asked me, ‘How’s work?’ I said, ‘Oh, they dumped me. I don’t know what I’m going to do.’ She asked, ‘Do you want to be a Pilates instructor?’ Without hesitation, and jumping at the chance, I replied, ‘Yes!’ 

I knew right away that I wanted to work with people with disabilities, to help people the way my instructors had helped me.

Accessibility Factors 

My doctor had recommended Pilates as a form of disability management over a decade ago, and now, I have the distinction of being the only person worldwide certified by Merrithew (a company that trains Pilates instructors) to have cerebral palsy. I would like that to change.  

We need more people with cerebral palsy, limb loss, traumatic brain injuries, and other visible disabilities working as Pilates instructors, personal trainers, yoga teachers, Zumba teachers, and spin class instructors. Disability shouldn’t be the thing that prevents someone from working or participating in the wellness industry. It should be the reason why they enter the industry, especially to help people who are in similar situations that they’ve been in. Many of my clients started their Pilates classes with me and have told me that they wouldn’t work with a non-disabled instructor because they’d be too intimidated. They stay with me because my disability makes me less intimidating to them. They have more faith that because I can do Pilates and teach Pilates, that they’d be able to as well. 

I’ve been working with a client for over two years who came to me after she’d had a stroke and been in several car accidents. She needed help with her balance. She progressed quickly and has better balance and stronger muscles than ever before, and carries herself with more confidence and assuredness than she used to. She credits Pilates with much faster recovery following pain, injury, or setbacks from previous health concerns. 

A client came in with whiplash from a boating accident. She also had a knee injury six years prior. She’d fallen off her bike and broken her knee. After six months of near-daily Pilates classes - in the studio and over Zoom - the pain from the whiplash resolved and, for the first time since her accident, she could sit cross-legged comfortably. This hadn’t happened with any other form of exercise. She’d been very skeptical about Pilates, thinking that, because she was a runner, she didn’t need anything else. Pilates helped her rehabilitate herself and regain function in her body in a way she never anticipated that it would. 

I have also progressed hugely in my own Pilates practice in the last two years. I have resolved chronic back pain by developing stronger ab and bum muscles, and I have better balance than I’ve ever had. I’m able to catch myself if I slip or stumble and, in the last two years, I’ve only had one fall outside in the wintertime. My whole life, as soon as it snowed, I would fall every day, often more than once. 

Pilates is not difficult, time-consuming, painful, or prohibitively expensive. Start with one class per week and build up to two or three over time, complementing the work with other exercise, like walking, cycling, swimming, or yoga. One group Pilates class per week costs $20, and you can use Pilates to prevent injuries that could be far more expensive to treat down the line. If an exercise hurts, an instructor will offer modifications to make it more comfortable - that’s their job. 

The Importance Of Representation 

A few months ago, a client contacted me, sharing that she wanted to do Pilates but was afraid that, because of her size and arthritic pain, studios would reject her. I realized that, if she believed that a studio would turn her down, other people believed the same.

 She showed me all the Pilates websites of the studios in her hometown, and nowhere was there any mention of rehab Pilates, disability access, size inclusivity, or modifications for beginners. I immediately hopped onto Facebook live and chatted about the need for all bodies to be represented in the industry, especially on websites and social media when people don’t know anything about Pilates and want to learn more about it. 

One service that does this brilliantly is Pilates On Demand, a streaming service where anyone interested can take classes online. They are passionate about all forms of representation, and their clients represent all bodies types and abilities. They reached out to me last year to have me teach both disability-adaptive classes and prenatal classes, and they’re committed to making a difference in the wellness space. 

My disability affects my movement, posture, and balance. After a year of consistent Pilates classes, my pelvis untwisted, my foot stopped clunking when I moved, the huge curve in my spine diminished, and I carried myself differently. I was more confident and surer of myself than I had ever been. I found something I loved to do, and I looked forward to my classes. I always say that my tombstone will read, ‘She Died Alone On Her Reformer, With Her Feet In The Straps, Surrounded By Her Props, Books, and Dyson HairDryer, While Blaring Billie Eilish.’ 

Now, as an instructor, I get to see and experience similar successes with my clients.

Pilates is adaptable for any fitness level, ability, or size. 

My own progress and my clients’ progress is proof of that. 

ABOUT THE AUTHOR

Norah Myers is the only person worldwide certified by STOTT PILATES to have cerebral palsy. That needs to change. She is passionate about disability representation and wellness. 

Learn more about Pilates and how it may help you at wellnessbynorah.com

Explore Possible

This blog post is part of Explore Possible, an initiative by Manitoba Possible to amplify stories, perspectives about disability, accessibility, and inclusion.

Read more at manitobapossible.ca/explore-possible or continue on to our latest posts by clicking the titles and arrows in the bottom corners!

Living with Asperger's Syndrome (Autism Spectrum Disorder) has particular rewards and difficulties. 

The rewards are noticeable. We tend to be good students, reliable employees and model citizens once we understand what the rules of institutions are and receive support in learning how to live by them. If we are given chances to participate in these institutions fairly and without prejudice, we can contribute to them, and even change them in positive ways. We thrive in situations where we know exactly what is expected of us and how to meet these expectations in the workplace. Unfortunately, those supportive situations are not often available and that can leave people with Asperger's feeling like driftwood on a river shore, forgotten and unsure of how to proceed with their lives. 

The biggest stumbling block for most neurotypical people in understanding Asperger's is that it is an invisible disability. Unlike physical disabilities, there are no outward signs. It occurs within the person's brain, and it is difficult for even the most intelligent, or "high functioning", people on the spectrum to put their disability coherently into words. Moreover, if you have met one person with Autism, you have met only one person with Autism. That is, while people on the spectrum share some characteristics, each is unique in their level of intelligence and how they process and interpret information. 

In the workplace, we may find a large amount of continued social interaction difficult, such as in regular strategy meetings. We may also have a greater sensitivity to change in routines and things that stimulate the senses, and these things, such as noise levels, temperature and particular smells, can affect our ability to focus. It may contribute to what is known as "autistic inertia", where we may be unable to work if these things bother us too much or we don't have the proper support or instruction to perform our assigned tasks for the day. 

Some employers have attempted to alleviate these issues by providing solutions, such as the use of noise-cancelling headphones to remove that stimulus. But not all do, and that weakens the ability of people on the spectrum to contribute to work environments effectively. 

However, our perspective may be an asset in areas where continued direct social interaction is not required, such as in freelance writing, where we may be able to provide unique perspectives on issues and events that others may not. 

Put simply, we have a different way of thinking, processing and interacting than the rest of the world, and we are, intentionally or not, often punished mentally and socially for not thinking the way the rest of the neurotypical world does. 

You might consider us to have the Diesel automobile engine of brains, as opposed to the standard internal combustion model. A car that runs on Diesel fuel needs that particular kind of fuel to run and no other. Now imagine trying to operate in society on Asperger fuel, but discovering that most of society has only stations for neurotypical fuel. 

And nowhere is this perhaps more the case than in the online world.                                                             

To use another metaphor: the Internet to people with Asperger's is often like living in a cottage on the outskirts of an ancient forest, with no clear entrance or exit, and no way of figuring out how to get in or out of the place without the sort of guidance and friendship there that we crave. The people with Asperger's had no role in the creation of this forest. The people who planted the trees knew little about our needs. So they grew the forest to suit their neurotypical needs only. 

Thus, we have social media websites that are built around neurotypical notions of what acceptance and popularity are, and how to increase that acceptance and popularity, which run counter to the ways in which people with Asperger's would approach those ideas. Worse, there are no clear instructions given at the outset of joining these organizations about what they are and what they are to be used for.  

So how are people with Asperger's supposed to know how to use them in the "right" way? 

It's not just social media. So much of art and commerce is online now that it is impossible for anyone, Asperger's or neurotypical alike, to get along without having some sort of presence there. We are told that we "have" to be there in order to "succeed", and that we "must" follow patterns of practice and behavior that we found difficult and alienating in the real world, let alone in the online one.  

If you go into the forest without a map and a compass, you will get lost.  Online behaviour and practice pose similar risks for people with Asperger's.                                                       

My own behaviour, online, has tended to be limited due to these concerns. Yet, as both a traditional and a self-published author, I am expected to do a considerable amount of promotion for what I have written and published, as my publishers provide little or no help. This is difficult as Asperger's people are not gifted with the kind of interpersonal skills that help with promotional efforts. 

It has created other difficulties. I am a devotee of animation, and I’m a published author on its history. The advent of streaming services, with their overwhelming plethora of programming, their habit of "dropping" large volumes of content all at once, and their bait-and-switch manner of making content available or not, has played havoc with my accepted Asperger's notion of watching a certain show at a certain time.                                                             

I grew to adulthood with the Internet as a secondary feature in my life, rather than a primary one. As a result, I developed habits that many newer media organizations have "disrupted" to a major degree. And the operations of many media organizations I used to trust have been taken over by people with different ideas of communication. It is essential for institutions that are used by all people to have input from all of those people, and be easily accessed by all of those people. Intentionally or not, online and in the real world, neurotypical people have long had a monopoly on discourse because they possess and use means of communication to which people with Asperger's have had limited access. Therefore, they negatively affect people with Asperger's with even the simplest words and deeds and are completely oblivious of it because no one criticizes them for it.   

Some suggestions as to how to improve online spaces are as follows: 

• create safe spaces where a respectful tone is expected 

• avoid overstimulating backgrounds which can get in the way for those with sensory issues 

• make internet access and devices more available to people with disabilities. Since they are twice as likely as the general population to be unemployed or live in poverty, basic access is often denied them.  

Give people with Asperger's the tools and the support they need to navigate a strange world they did not create. If so, you will have our eternal gratitude, support and loyalty- our greatest and most enduring personal qualities. 

That's not too much to ask for, is it? 

.  

 About the Author

David Perlmutter is a freelance writer based in Winnipeg, Manitoba, Canada. He is the author of two books on animation history: America ‘Toons In: A History of Television Animation (McFarland and Co.) and The Encyclopedia Of American Animated Television Shows (Rowman and Littlefield), and five self-published books of speculative fiction: Orthicon, Honey And Salt, Let’s Be Buddies, Nothing About Us Without Us, and The Singular Adventures of Jefferson Ball (available through Amazon Kindle and Smashwords). He can be reached on Twitter at @DavidPerlmutt10 and Facebook at DavidKPerlmutterandFriends, and his stories and essays can be read at Medium, Curious Fictions and Vocal.

Explore Possible

This blog post is part of Explore Possible, an initiative by Manitoba Possible to amplify stories, perspectives about disability, accessibility, and inclusion.

Read more at manitobapossible.ca/explore-possible or continue on to our latest posts by clicking the titles and arrows in the bottom corners!