“We’ve been sold the lie that disability is a Bad Thing.” – Stella Young
It never ceases to amaze me how one short phrase can evoke such a strong emotional reaction. When I read the above quote on my Instagram feed the other day I was overcome by a lot of feelings. But high on the list were disbelief, annoyance and anger. I don’t think that I am often speechless, however when I tried to explain what I was feeling to my husband, I came up blank. Over the next couple of days, the phrase wandered in and out of my thoughts: “We’ve been sold the lie that disability is a Bad Thing.” Really, a lie? Call me crazy but I don’t think it’s a great thing. I wouldn’t even say it’s a good thing. No, I would definitely say that disability is a bad thing; I would say that disability sucks!
As I kept contemplating this idea of disability being a good thing, I found myself getting more and more frustrated with this person. Except all I knew about her were these 11 words she spoke in a TED Talk. I realized that it really wasn’t fair for me to be judgemental of her based on one sentence she spoke during a 9-minute presentation. I even discovered my own hypocrisy because, I too have been unfairly judged on quotes and titles after people have neglected to read an entire post that I’ve written. I found her TED Talk online and I watched it. I definitely wanted to hate everything she was going to say (so much for having an open mind) but I found myself agreeing with her more than I disagreed with her. She was funny and made a lot of good points on inspiration and courage. And when I finished watching, I had warmed to her. I still disagreed with the initial quote that I read, but felt more understanding of her overall objective. See, there is a common goal throughout the disabled community and that is to normalize disabilities in society. But there is a difference between normalizing and desensitizing and I fear that sometimes the line becomes blurred with our efforts.
Many disabilities are a product of an accident or an illness. They are the result of the moments in life that we try our best to avoid and hope never happen to us; they are the result of trauma. Yes, I have heard some people talk about how their injury was a good thing in their life for one reason or another. But this just isn’t the case for me. Put simply, my life was better before my injury. My disability is not a good thing in my life – in fact, it is the worst thing in my life. It doesn’t mean I cannot live, achieve or even thrive. It doesn’t mean that I cannot be happy and live a full life. But it does mean that I am limited. I think that is where the desensitization piece comes in. In the process of proving that disability isn’t so bad, we run the risk of overselling our cause.
I believe there is a balance between proving the capabilities of the disabled population and also revealing the challenges experienced. We want to see the person shine through, but there is purpose in spotlighting the limitations we come up against. In order to create a world that is free-and-clear of obstacles for anyone with any type of disability, we first have to admit what is hard and point out what the existing barriers are for us. But it’s as though it has become politically incorrect to say that a bad situation is – in fact – a bad situation. Because what if that then becomes all people focus on? What if then all of the work we put into to normalizing our lives becomes obsolete? What if both sides of the coin cannot be seen? Except, we know that every coin has two sides – you just have to pick it up, turn it over or spin it around; you just have to change your angle.
Disability is something that is experienced differently for everyone and it is something that has to be examined from numerous angles. There is a lot of good going on within this community and yet still so much work to be done. We somehow have to simultaneously prove our worth, while also advocating for our needs. Advocating for the needs of yourself or others is essential in making a difference in this world. There needs to be change. We need to change how we interact, how we teach and how we create buildings, parks and other public spaces. But even if this world could be clear of physical obstacles, I imagine I would still argue my point that disability is a bad thing. Because all of the ramps, elevators and smooth terrain in the world cannot give me back some of the things that I have lost.
While accessibility is key for the independence, safety and overall enjoyment of life for the disabled community, it isn’t everything. This injury has taken things from me that cannot be replaced by accessibility. I will never play soccer in the backyard with my kids or run down the beach and into the ocean with them. I cannot stand in the pool so my daughter can jump into my arms, slide down a waterslide or sled down a snowy hill. I won’t ever go pee because I know I need to but instead because the clock says it’s been 3-4 hours since the last time I went. Never again will I have an orgasm in any normal or expected way. This is my short list but, for me, it all sucks. I miss this stuff that was part of my identity and I think that’s OK! However when we edge over the border to desensitization, we run the risk of taking away the permission we have to say “yeah, this sucks today. This is really hard”. I don’t think it is OK to take that permission away and by telling people that disability isn’t a bad thing, I fear we start to do just that.
Paralyzed or not, I have a lot of good in my life. My disability infiltrates every aspect of my day-to-day and I know that it is important for me to compartmentalize the struggles it brings so that I can get enjoyment and fulfillment out of everything else. I file away the hard stuff and deal with it as I need to so that I can continue to prove my worth and also advocate my needs. I want to be part of the reason we normalize this way of living without desensitizing the world from the challenges we face. Because I still have a lot to offer – that hasn’t changed. And if a safe and reliable cure came about, I wouldn’t choose to continue living my life from this chair. No, I would choose to get back as many of those pieces of myself that I could. I would choose to say goodbye to the chronic pain, unpredictable bladder and all of the other health issues that come along with this disability. I would leave my disability behind me.
I don’t believe we have been sold a lie that disability is a bad thing because I believe that disability is actually a bad thing. It’s challenging and painful and, a lot of the time, it is exhausting. I do however think we’ve been sold a lie that disability is the worst thing, an un-livable thing and an end-of-the-world thing. And that’s just not true. I hope you can see that by looking at me and my life. And until that cure is a reality, life will be good and full and happy. Disability will still suck and I am OK with that because disability is not my entire life, just a piece of it.