I recently read the article, Saying Stephen Hawking Is “Free” From His Wheelchair Is Ableist published in Teen Vogue. Initially, I had very mixed feelings about this article. In theory, I understand the spirit of saying, “The fact of the matter is that Stephen did all of his amazing work with his disability — not in spite of it.” We shouldn’t try and erase someone’s disability, and it is certainly part of them. I fully understand the idea that Ableism makes people unnecessarily ashamed to have a disability, and we must embrace the whole person, not try and strip them of their disability. However, as someone who is ON disability and LIVES with a disability, I would also challenge most people who have disabilities to honestly ask themselves whether they would choose to have that disability. I have no doubt that Stephen Hawking embraced his disability, and was successful with it and not in spite of it, but if given the choice, I wonder if he would have chosen to stand up and walk out of that wheelchair at any given time.
I know I would not choose to live with debilitating mental illness. Obviously, I don’t like the sentiment that death is a noble escape from disability. That’s reductive and diminishing. Clearly, disabled people can achieve nearly anything an able-bodied person can. But there are great obstacles. Huge challenges. I think its disingenuous to assert that people with disabilities would PREFER to have been born with, or develop a disability. Let’s be honest with ourselves. And yes, I’m sure this post will come under fire, and some people may even assert that I don’t have a qualifying disability because I’m not in a wheelchair. Yet, I still qualify as disabled. Doesn’t that qualify me to speak on the subject?
In this increasingly fractured and divisive time of identity politics, I sometimes wonder if we take these movements too far. To say I’m disabled, and proud is great. You should be. But is saying, “I’m disabled, and proud” the same as saying, “I’m black, and proud?” There’s nothing innately broken, disabled, or wrong with being black. Yet society seems to suggest there is something wrong with being disabled. Granted, no one chose to be black, just as no one chose to be disabled. But in our society, being black should be life-affirming, proud, and wonderful. Obviously, we live in a society plagued by Institutional Racism, and being black is unfortunately a liability much of the time. We live in an inequitable age, where women, members of the LGBTQ+ community, and minorities still face unenviable challenges. Many of them would rightfully suggest that racism, bigotry, and discrimination is a prejudice not unlike being disabled. However, for those of us who can rationally analyze what it means to be any race (as much as any of us can, given our pre-conditioning and stubborn socialization), we would embrace the fact that there is no inferior race, and that we are all human and blessed with an ineffable beauty. The same can be said about gender and orientation. And yet, in many people’s eyes, being disabled is somehow a state of being “half-formed” or “broken.” How could we not feel that way? Why would we be spending billions of R&D money trying to fix us? Being disabled is a social justice issue, just like being black in America is, but it’s not exactly the same thing. It’s hard not to feel inferior when your disability is trying to be fixed. Sure, there are plenty of people trying to “fix” black people or trans people, but no one worth listening to. Those people are just right, just the way they are. And we want to say that disabled people are too, but it is challenging, when to be disabled also means something or someone in need of a fix. It’s hard to directly compare disability with other social justice issues. No one in their right mind would try to fix being a woman. Or being born black. (although many people have tried) Yet, every day, we try and fix being disabled.
If we are truly honest with ourselves, we must also acknowledge that few people – if given the choice – would actually choose to have their disability. That may not be true for all, but I would venture to guess that a good many of us would. At the same time, I also allow that this thinking might be considered “Institutional Ableism” and that I have been socialized to see disability as “lacking,” “inadequate,” or somehow “broken” or “incomplete.” I accept that. I suppose there is a certain degree of self-loathing when it comes to having a disability, and many of us with challenges are “blessed” with the ignominious defeat of shame coupled with low self-esteem. I don’t deny that. I know that I am plagued by shame and guilt. Much of this undoubtedly stems from my disability. (A challenge, I might add, that has undoubtedly been with me since adolescence, but only recently diagnosed.) Does this ingrained and internalized guilt and shame manifest itself in self-loathing ways? Undoubtedly. I have no doubt that society’s view of disability and being in some way “broken” has worked its way into my subconscious. Hell, it’s right there in my conscious mind. I know what it feels like to feel broken. To be half-formed. To be somehow incomplete. Am I part of the problem?
I’ve sometimes wondered if developing a disability late in life may be more challenging than being born with one. That’s not to say that it isn’t as difficult dealing with the challenges from birth. However, I wonder if those who were born with a disability, and have known no other life, have an easier time accepting themselves and their circumstances. I sometimes wonder if it’s like the famous saying, “Time + Tragedy = Comedy.” Does Time + Disability = Acceptance and Self Love? For those of us who developed these disabilities after having lived a life without them (or without being diagnosed with them), it may take getting used to, and there may be an extended period of denial and/or shame. And grief, at the lives we perceive we lost. I may very well fall into that category. Perhaps I haven’t fully embraced my disability, and I am still entrenched in shame. If I truly felt blessed with my disability, perhaps I wouldn’t be so quick to try and shed it or profess the desire to have been born without this debilitating disease. Maybe I wouldn’t naturally assume that those with disabilities would choose NOT to have them, if given the choice. If my disability has in fact shaped me – as has my intellect, my height, or any other characteristic I have no control over – than perhaps I shouldn’t see it as a deficit, but rather, a trait not unlike the others. It is inescapably and indivisibly a part of me, and my identity. Maybe I would choose it.
In truth, Ableism is the stigma that keeps us from talking about mental health or averting our eyes from those in wheelchairs. It is the proverbial albatross around society’s necks, and one thing that prevents us from talking honestly about the emotional toll our averted gazes, furtive glances, and hushed whispers truly betray. As a society, we must grapple with the paradox that as we try to find cures for diseases like ALS or Bipolar Disorder, we are not trying to unduly cure the person suffering from those diseases of being who they truly are. How do we separate the person from the disease? Or do we? Can we love the whole person, while simultaneously attempting to cure them or their “disorder?” Is it even proper to call it a disorder? If “order” is normal and preferable, than surely disorder is broken and in need of a mend. I suffer from Bipolar Disorder. Am I in need of order? Probably. But is my life broken beyond repair, or is my condition just one of the many traits that make me unique and unquestionably loveable? I don’t know the answer to that question. I would hope it’s the latter.
The point is, the words we choose do matter. My initial reaction to this article was wrong. I was wrong to have a knee-jerk reaction to someone insisting it was Ableist to imply Stephen Hawking might choose death over his disability. Perhaps he might have. Perhaps he wouldn’t have chosen his disability. But he had one, and he chose to live his life fully and in a meaningful way. Maybe none of us would choose our disabilities, but for reasons unknown, they chose us. We weren’t cursed or smote by God, but by genetics, heredity, fate, circumstance, randomness, or whatever else you want to call it. It happened to us without our control, and we can either wallow in shame, or embrace what we’ve been given. Should we reject ourselves because of this? No! Is it okay to wish we weren’t burdened with these diseases? Yes. It’s okay. It has to be. We didn’t choose this. But we can choose how we think about our disability. Maybe we wouldn’t choose the disability. But it must stop there. The words we choose to describe our disabilities matter. We must be careful not to assume that someone would choose death over a disability. Or even that they wouldn’t choose it. Maybe they would. After all, it has made them who they are. Those are strong people, and something I aspire to.
What I do know is that I have a difficult time accepting my disability in its entirety, and I would find it surprising if anyone who suffers from a disability truly – in their heart of hearts – would choose to suffer with their disability or live without the pain, inconvenience, and accompanying heartache that disability inevitably brings. Maybe they would. I long to be that person who is so comfortable in their skin, that even their perceived deficits are seen as unique advantages. Perhaps one day, I will accomplish all the things I hope to accomplish not in spite of my disability, but because of it. With it. With all of me.
The words we choose matter. To be disabled is not to be broken. Even if deep down, I still harbor those hateful thoughts about myself. Even as medicine and science tries to cure us of our disabilities, we must cure ourselves…from the inside out. We must learn to embrace our disabilities, and accept ourselves for who we are. Only then, perhaps, we will choose to stay in the chair. Or learn to walk on our own. Society must learn to see us WITH our disabilities, and not be so hasty to change who we are and what we represent. The stigma is real. And if we cannot love ourselves first, it’s hard to imagine how we can expect others to see us fully and embrace us wholly. It’s a reciprocal relationship, and society needs to change, while we need to embrace our disabilities.
Maybe Stephen Hawking would have chosen the chair. Maybe he wouldn’t. But it’s not for us to decide.
We still have a long way to go. Perhaps me more than anyone.
amuseofire 