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I Won’t Pretend That Disability Simulation Works

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A black and white view from behind of a man in a black jacket pushing a wheelchair next to a woman in white who is walking and carrying grocery bags.Activities meant to simulate the experience of disability are so often lauded as moving, powerful, eye-opening experiences. With just a few hours in a wheelchair, wearing earplugs, or wearing a blindfold, people supposedly gain a deeper understanding of what life with a disability truly entails. I, for one, don’t buy it.

The goal of increasing sensitivity and awareness is a respectable one, but I’ve long wondered if simulating disabilities ever truly accomplishes this.

How can what amounts to a game of pretend enlighten a person about something that has shaped my entire life? Of course, I realize there are several people and organizations out there that are trying to do their best to use simulation activities to create positive change. But at the end of the day, the temporary glimpse into disability that such exercises provide are just that – temporary. It is simply impossible to fully immerse yourself in another person’s being.

Herein lies the problem with disability simulation. It may make a person more aware of another person’s experiences, but it doesn’t dig deep to the root of discrimination against people with minority identities. Instead, it’s more likely to evoke empathy or pity than true acceptance. I’ve heard reactions that point to this time and time again. For instance, while chatting with an able-bodied friend of mine who had to wheel around Washington, D.C. for a school project, she told me “I don’t know how you do it. When I tried to get on the train, I gave up and got out of the chair to lift it over the gap. It’s so hard being in a wheelchair.”

Assuming that a majority of people who participate in simulation activities have similar reactions (which most that I’ve encountered do), why isn’t this sparking real noticeable change in ending the stigma and accessibility barriers that I face every day? 23 years after the Americans with Disabilities Act was passed, the disability community still encounters inaccessibility in so many places. Clearly, the takeaway message that is hoped for from disability simulation is not getting through.

Some may argue that this is because too many disability awareness activities just aren’t being done the right way, or that enough people aren’t involved in them. Well, I’d like to counter that they’re just not working. Simulation is not an ideal way to transform society’s view of disability.

Consider the fact that for so many, disability is an identity and a culture, as are race, religion, ethnicity, gender, sexual orientation, etc. Now, imagine if schools and organizations began to hold widespread Black Awareness events, during which white people would put on blackface and go around in public for a few hours to gain an understanding of the experiences of black people. I think it’s an understatement to say that would rightfully result in a nationwide angry uproar for several reasons.

First of all, the term “awareness” makes minority groups sound like a problem. Second, a brief activity can never replace a lifetime of experiences. If being black and being disabled are both identities, why are disability awareness events the only one of its kind deemed to be acceptable, while awareness events for other identities would undoubtedly be deemed offensive? To me, it feels like the opposite of acceptance to have my entire identity as a person with a physical disability reduced to an isolated simulation experience.

If this logic hasn’t convinced you that disability simulation isn’t effective, take a moment to ponder the situation in reverse: my disability severely weakens the joints and muscles in my legs, so the only way I can experience walking is by wearing heavy leg braces made of metal and plastic. The awkward waddling I occasionally do around my kitchen during physical therapy in no way gives me a true understanding of what it feels like for an able-bodied person to walk, go up stairs or climb over obstacles each day.

In much the same way, an able-bodied person using a wheelchair to awkwardly push themselves around in no way gives them a genuine understanding of what it feels like for a disabled person to wheel around and be stopped in his or her tracks by a high curb every day. In each case, the simulation isn’t natural or accurate. Both myself and the able-bodied person are using nothing more than external devices made of metal and plastic to do something we don’t normally do, and this does not translate to comprehension of deeply internal experiences of someone we’re not.

Furthermore, it would be silly if while speaking to someone who walks, I said, “I don’t know how you do it. Walking is so hard.” Of course it’s hard – for me. But for an able-bodied person it’s instinctive. And using a wheelchair is hard for an able-bodied person. For me, it’s innate. Moreover, being disabled is not so challenging solely because of my physical circumstances, a stereotype that simulation often leads participants to believe; it’s hard because of environmental, social, and attitudinal barriers.

So, you can be “aware” of me all you want. You can attempt to roll a mile in my wheelchair. You can analyze and discuss and dissect the experience from a million different angles. But we must move away from equating empathy with acceptance. We must embrace differences as a fact of human existence without first needing to imitate them, for these kinds of activities are not effectively contributing to long-term advancements in the disability rights movement.

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About Emily Ladau

Emily Ladau is a passionate disability rights advocate whose career began at the age of 10, when she appeared on several episodes of Sesame Street to educate children about her life with a physical disability. In the years that followed, Emily took on leadership roles in many advocacy initiatives. She graduated summa cum laude with a B.A. in English from Adelphi University. Immediately after graduation, Emily was selected to participate in the prestigious American Association of People with Disabilities internship program based in Washington, D.C. Since completing her internship in August 2013, Emily has been both employed and volunteering with multiple organizations to foster employment opportunities and develop resources for the disability community, as well as to encourage people with all types of disabilities to develop their inner voice for advocacy. Emily blogs at Words I Wheel By about her experiences as a disabled young adult, challenging people to consider all aspects of the disability experience in new ways. She loves forming new connections, and invites you to like Words I Wheel By on Facebook and follow her on Twitter @emily_ladau.


15 Responses

  1. avatar Kasthyte says:

    I have a spinal cord injury and have been confined to a chair for 14 years. It will NEVER be my identity. It will NEVER be my culture.I will never ACCEPT IT. i don’t know what psychology a person has to possess to suborn their human spirit to this “less-than” existence. I might be crippled. I might be handicapped. (These are honest words, BTW.) But I will never join the ranks of professional cripples and I will never suffer their distorted PC silliness.

  2. Hi Kasthyte. I see where you are coming from, but for so many of us who are disabled, we do not deem ourselves “less-than.” In fact, to be disabled and judge the lives of disabled people less-than seems to be rather offensive to people who have embraced the lives we have. Perhaps this comes with differences in experiences based on being born with a disability versus sustaining one later in life, but I am proud to count disability as part of my identity and always will be.

    • avatar Annae Jones says:

      I agree… my disability makes me more than, not less than. And acceptance was a catalyst for success. The best part of having a disability is having a “community” that understands how you feel, while at the same time I get to be part of the “regular” world as well. Although it sucks to have a disability sometimes, there are a lot of good things about it. Emily, thanks for your thought provoking article.

    • avatar DavidG says:

      I’m far more rounded for being disabled than I ever was non-disabled, and a better person for having been exposed to discrimination first hand – a startling experience for a straight white male! Disability doesn’t diminish me, and whether you call it culture, community or whatever, there is a common lived experience in facing the discrimination that’s out there, and in facing it down with other disabled people and other minority groups.

      Equally there is shared experience across people with common disabilities, I’ve not met anyone outside the Spoonie community who really understands fatigue issues, or people without ongoing pain who really understand what that means. Having that community there for support when you need it can be tremendously valuable, and I’d urge people to seek it out, not deny it.

  3. avatar Lizzy Hall says:

    Emily, I personally agree, I think the age does make a difference on how you experience your disability. I was not born with my disability (stroke) but have had 23 out of my 29 years. My disability is always intrinsically with me and it affects every decision I make in either big or small ways. I always find it annoying when ( and this has happened numerous times ) one of my friends or family members hurts their arm or leg and they comment to me what they find hard . It’s always something (e.g. how do you shampoo with one hand?) that for me is the least of my problems. I think they don’t get how complex a disability can be . How someone experiences and grows up through their disability can be very different from how it looks visually. I don’t know how you would accurately simulate my disability with all of its complexity . Visually it looks like I just walk with a limp and my right hand and arm are curled up. The fact is most of my disability experience happens on the inside. The unique feeling of having reduced sensation in the right side of my face arm, hand, leg, and foot, a neurological tendency to ignore my right side altogether, the chronic painful involuntary spasticity throughout my right side, being partially paralyzed throughout my right side, and the list goes on …

    I also feel like the disability experience is cumulative, that it is not how you feel doing it for a day but continuos, over many years, in all situations. Those two experiences are very different .

    Thank you for your viewpoint

  4. avatar Karin says:

    Very nicely written. As an individual with a hidden disability and someone that has friends with and without disabilities, I often find myself trying to explain to others who use simulation as a way to increase acceptance how not everyone agrees with that approach. Rather than simulating the “disability experience” people should become friends with others that have different experiences. I have learned the most from just talking and going out to lunch, coffee, etc with my friends. Whether they be of a different race, religion, or ability.

    Keep on speaking out, just listening is a great way to learn and connect.

    Thanks,

  5. avatar Ann says:

    For me, disability is neither a culture nor an identity. I don’t have a crowd of friends who share common mobility issues with me. I don’t think any category of disability has an overarching culture of shared experience, except possibly the deaf community who share a common language. And my identity has never been tied to my disability. I am attractive or not, talented or not, intelligent or not, regardless of whether I can walk or not. I certainly have experienced wrong-headedness and discrimination from the able-bodied and I face many challenges, but it is not the primary focus of my identity.

  6. avatar Jonesey says:

    A long time ago in a galaxy far away, I worked as a journalist. I was invited to do one of those “use a wheelchair for an hour to raise awareness” challenge-come-publicity-stunt affairs. I turned it down. Even though I didn’t have a lot to do with the wider disability community back then, it felt like using someone else’s physical reality as a fancy dress costume, and it didn’t sit well with me.

    Plus, back in those days I blogged using my real name (I’ve since stopped for lots of reasons, but mainly the creeps in my inbox.) So a little research would have told them they’d made their offer to the only journo in town who had an actual disability!

  7. [...] Emily Ladau recently wrote this: “[Y]ou can be ‘aware’ of me all you want….You can analyze and discuss and dissect [disability simulation exercises] from a million different angles. But we must move away from equating empathy with acceptance. We must embrace differences as a fact of human existence.” [...]

  8. avatar DavidG says:

    I agree completely with what the piece has to say, but I think it can be taken further. Using a wheelchair or a blindfold for an hour or two teaches the person involved to fear the things they can no longer do (at least for that hour), but it simply cannot teach them how normal it is to be disabled. Pain – normal, fatigue – normal, mobility impairment – normal (yawn!).

    Even that reaction to change in ability is different between a disabled person and a non-disabled one. My disability varies quite a lot, so I adapt as I go along, mostly unconsciously. I noticed at lunch today I was lifting glasses with both hands, that’s uncommon but not unknown. A non-disabled person told they can only lift a cup with both hands might find it startling, even scary, but for me it’s simply – Oh, interesting, move on…. (In fact the first time it happened someone else had to point it out, I literally hadn’t noticed).

  9. brilliant! i have often thought about this. ask normals to: wear ski boots or cement blocks duct taped to their feet for a week, spend the week in a wheelchair (and NOT get out of it!), pee in a bottle, give up the car keys, be required to depend on strangers to assist… etc. but your insight into the emotional/spiritual aspect which cannot be simulated is what gets me. so right on.

  10. [...] I Won’t Pretend That Disability Simulation Works [...]

  11. avatar Paula Sotnik says:

    Well done Emily! I could not agree more!

  12. avatar Dr. Marti Sopher says:

    Excellent article! The biggest problem with simulation is that the person playing disabled can stop it at any time and go back to a life that offers more quality of life, no discrimination, and little effort to function daily whenever they want to end their disability; what freedom! Really being disabled doesn’t offer a vacation from it — it’s real, it’s 24/7/365 and requires a daily energy level to exist in a non-disabled world daily that creates daily stress, all day long. It’s like my on/off switch has to be pressed to be on at all times. You cannot understand that feeling until you are disabled.

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