How my wheelchair fits into new friendships

There are many disabilities out there that significantly affect people’s lives but are not immediately noticeable to the general public. That is not the case with spinal muscular atrophy (SMA). As an adult living with SMA type 2, I know I have a few visible, physical indicators of symptoms like scoliosis, low muscle tone, and limited range of motion.

And then there is my wheelchair — the most obvious clue that tips off even vaguely observant strangers to the fact that I am disabled.

In some ways, I see it as good, because “what you see is what you get” — no surprises or delayed revelations. But in other ways, it seems like an overwhelming obstacle, like a giant excavator parked in front of a flower garden, blocking the view and access to really beautiful things. People can get hung up on the topic of “the chair” as something to either avoid or fixate on, which could make getting to know me complicated, but it doesn’t have to be.

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It’s not all about the wheelchair

I’ve spent a lot of time and energy throughout my life learning how to help people look up from my wheels to see my face. My heart sings (in its best Christina Aguilera imitation) that my wheelchair is not my identity, and it isn’t “who I am inside.” I have interests and passions, talents and skills, fears and doubts, hopes and dreams. I’ve had some unbelievable experiences and incredible opportunities that have shaped and changed me over the years.

There may be a handful (or a few more) of things I cannot do, but there is exponentially more that I can do — perhaps even one or two things an average able-bodied person cannot. And I want those to be the things others see and admire in me.

With new friends, I try to initiate conversation, ask questions, and invite them to do things with me. The more time we spend together engaging in normal activities that we both enjoy, the more we truly see each other. I’ve had so many people tell me that, in the course of our friendship, they forget that I’m even in a wheelchair. And while I love the sentiment behind that, it also makes me worry that I did my job a little too well.

It’s also kind of about the wheelchair

While it is really important to me that people see beyond my wheelchair, there is also another side to this reality that I’ve learned is just as important. My wheelchair (the symbol of my disability) is actually a significant part of me. I wouldn’t be the woman I am today without the unique challenges that I face in my everyday life. It has taught me how to adapt and persevere, how to be creative, brave, and compassionate. And it would be unfair for me to ignore it and not allow others the chance to know and care about it, too.

That doesn’t mean I want it to be the main focus of our conversation or the thing that dictates what we do. I just don’t want to pretend like it doesn’t exist or that it doesn’t matter.

I need my friends to see my wheelchair and acknowledge my limitations, to ask questions and seek to understand all they can. If they didn’t, we would find ourselves in constantly awkward situations, like facing the obstacle of a flight of stairs or being unable to do physically active things together, like rock climbing or dismembering lobsters.

If they learn what I cannot do, they become better prepared and equipped to figure out how to do things with me successfully. It may be as simple as bringing a portable ramp along, or as crazy as retrofitting a camping rucksack into a carrier backpack.

Understanding my disability doesn’t need to be the end of the story; it can be the beginning of the adventure.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.