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The problem with “Spend a Day in a Wheelchair”

An empty wheelchair at the bottom of a flight of stairs

Many advocates, myself included, often point to the general population’s ignorance of the experience of disability as being central to the oppression faced by the disabled. The problem is that too many developers, designers and administrators are designing buildings, spaces, and programs along normative understandings of ability and function rather than basing their work in the aberrance of the human form. For years, we have run events like “Spend A Day In A Wheelchair,” in which able-bodied individuals are assigned certain disabilities and required to complete tasks, the theory being that by experiencing life with a disability these individuals will have a better understanding/appreciation for the plight of the disabled. In this blog, I would like to take some time to explain why this is a flawed educational tool and recommend we stop deploying these schemes, as they’re doing more to hurt the disabled subject than help.

Let me explain…

Pretending to be disabled, not actual disability

The core reason why these events are doomed to fail is because they are just simulations and therefore not a genuine experience of life with a disability. Ultimately, not being able to access a flight of stairs is frustrating for the participant but does not speak to the true anxiety and isolation of inaccessibility. Throughout the exercise, whether conscious or not, the participant knows their limitation is temporary and eventually they will be able to take off the blind fold or walk away from the wheelchair.  In this way, they are merely “playing” disabled, depicting limitation as some sort of challenge or game in which superior participants can navigate successfully. This is problematic because it is almost like black face, in which participants are asked to pretend to disabled “just for fun” and we, the viewing audience, are to sit and watch them struggle. Worst, though, this game sets disability up as a binary of “winners” and “losers,” an outcome that is ultimately in the hands of the user: if the disabled just try hard enough, they too can overcome. Further, knowing the simulation will end greatly reduces the impact, with participants only concerned about barriers insofar as it affects the outcome of the game and is not something they need to worry about otherwise.

Which brings us to the next problem…

The experience is too short

In rare circumstances these simulations extend an entire day, but generally participants are asked to adopt a specific diagnosis and attempt to complete a task as part of an organized event. Similar to converting limitation into a game, spending a couple of minutes in a wheelchair does not speak to the true forms of oppression the disabled face, most notably structural, attitudinal and policy related barriers. Confronting a set of stairs in a wheelchair is nothing compared to the stigma experienced when attempting to find work, the subsequent ordeal of applying to the Ontario Disability Support Program when you cannot get a job, or simply managing one’s daily personal care via a complex web of professional, private and personal support. System navigation is perhaps one of the most exhausting and arduous tasks associated with permanent disability, which cannot be simulated or replicated by spending several minutes (or even a day) in a wheelchair.

The result?

The root problem with “Spend a day in a wheelchair” events is the results generated from these interventions. Organizers of such events intend for participants to move from a medical model of disability to a social model, seeing first hand how inaccessible our world is and being inspired to make things better. The problem is that this is not the lesson most often taken from these activities. In my experience, participants often report having a new appreciation for how hard it is to be disabled: that things are not accessible, that pushing a wheelchair is tiring/painful, and that strangers will stare at you in public. Instead of ingratiating and integrating disability, this understanding serves only to validate preconceived feelings of pity for the plight of disabled while at the same time framing universal accessibility as being a project simply too big to achieve; there are just too many barriers. In this way, “Spend a day in a wheelchair” only really makes the nondisabled thankful they themselves do not require a wheelchair and further reinforces the distinction between those with and without disabilities.

So, what is the solution?

While there is no simple solution to this problem, the advice I can give is to stop running “Spend a day in a wheelchair” events as they are doing more to compromise the movement than support it. Rather than forcing people to “see the world through our eyes,” I think we need to spend more time showing how the nondisabled already are living in “our world;” that to be disabled is a universal subjectivity which we all experience as humans. In this way, the best way to make people understand why accessibility is important is not to force them to encounter the barriers we face but to show them all the barriers they face, already, each and every day and appeal to their own self interest. They already have a stake in the game of accessibility, they just don’t know it yet. A prime example of this comes from the classroom, in which I often talk to students about the ways mainstream education is inherently disabling: take for example standardized testing, which values certain skills, namely memorization and problem-solving, over others, like creativity and collaboration. Rather than making them understand our plight, we need to help the nondisabled understand that limitation is a reality we all share (regardless of diagnosis) as we are all fundamentally flawed creatures. In this way, to be limited is to be human and, therefore, accessibility is not just a privilege but a fundamental human right.

Additional reading…

By Jeffrey Preston

Born with a rare neuromuscular myopathy, Jeff has spent his life dedicated to advocating for himself and others with disabilities. With a PhD in Media Studies from Western University, Jeff's research focuses on the representation of disability in popular and digital culture. Jeff is currently an Assistant Professor of Disability Studies at King's University College @ Western University in London, ON.

19 replies on “The problem with “Spend a Day in a Wheelchair””

While I see your points, I have to say that in some cases, like in my town, things HAVE changed as a result of these exercises. We started years ago to drop curbs for wheelchairs and walkers,, to create signage that is more easily read by visually disabled, to remove barriers to movement, to making playgrounds more accessible for disabled children. We have a committee of disabled people who advise the local council on issues that pertain to them and they are the ones that organize the wheelathons and walkabouts that are attended by policy makers and public works.

You are right in that this affects the problems with the built environment only and does not affect the attitudes of the greater public. But I know my perception of my surroundings and my ability to move through an urban space has been profoundly changed by doing just these kinds of exercises.

Is it these events, specifically, that have let to your ability to move around or is it the hard work of advocates to educate the public on barriers that has helped to emancipate you? Or what about the rise of legislation that both mandates accessibility and codifies what accessibility looks like?

I think walkabouts or “guided tours” are a MUCH more effective means of educating because it shows puts the focus on what really matters (namely physical accessibility) instead of superficial discovers, like how hard it is to push a wheelchair or walk around with a blindfold. What is gained by people learning how “hard” it is to be us?

And that is my core problem with these simulations — not that they don’t bring about architectural change but the additional damage rendered by these events, namely the heaping load of pity that often comes as a result of the experience. Our message, as advocates, should not be “Look how hard it is to be us, please help!” but “Accessibility is a right, for all humans. Do not make accommodations because you feel sorry for us, become accessible because it is the right thing to do!”

I have had my whole neck and some of my back fused,I would like to try something like this to see how hard,and how people wheelchair bound face in their everyday lives,I’m sure it’s very tough

What makes it tough is not being in a wheelchair, it is that our world is generally not designed to be navigated in a wheelchair. That is why these events are so problematic, in my opinion, because it does not get to the core of the issue. People learning how to use wheelchairs is not going to motivate them to design accessible spaces, merely to “pity” those who must live this perspectively “tough life”.

I am finally able to walk short distances. I have been in a chair for five years and I am well known although I hide on boards behind this anonymous profile.

The biggest statement I can make to you, and I have made it when addressing groups of medical professional and health care workers, is that the biggest impact on me when I sat in the chair for the first time was the perception that my IQ was cut in half.
People speak to whoever is pushing my chair, asking them what I would like to eat, or where I would like to sit.

Helping someone physically access a world that treats them like a second class citizen is helping in some ways, but forcing them to face negatives they may not mentally be ready for or be able to anticipate and can do more harm than good. Someone who acquires a disability can find this especially devastating and unexpected.

I wholeheartedly agree with Jeff, in that universal accessibility needs to be a mandatory, non negotiable human right. Putting a ramp in front of a building helps some in wheelchairs, but makes it impossible for me to access because I am not strong enough to push my manual wheelchair up the ramp. Making all counters HI/LO accommodates all people, from young to old, disabled and non.

Pity is the worst thing you can give someone with a disability. I am educated but I can’t even find a job in fast food. I can’t get disability because my husband is self employed, and so even while he spends thousands on my medication plan, deductibles and equipment, he gets no support for home care, and the legislation that assesses eligibility takes gross wages into account, not net and not expenses. Giving a person with a disability a hand up, instead of a hand out, is a much better way to help.

Allowing someone to play disabled isn’t the way, I agree. It gives them a very short inaccurate and watered down version of life as a person with challenges but really doesn’t help see where to go from there.

Conducting tours of facilities that are doing it right, to give decision makers ideas to make their own facilities accessible to all, would be a much better use of time and resources.

Thank you very much for your positive feedback.

On the blog, I do not, but I have been thinking about starting one. I guess the reason I have not previously is because there are already well read and experienced advocates writing them. What is your opinion on this?

I spoke up here because I feel I now have a foot in both worlds, literally, and have a perspective affected by my recent health improvements. Your article moved me deeply.

It takes many voices to make a movement, so I think you should! It’s a lot of work and there are really very few tangible benefits, but I think there is value in having as many opinions, perspectives and views out there as possible. Dialogue is such an under appreciated element of any movement and we, in the disability rights movement, are not the best (so far) at cultivating a plethora of opinions. Hop on board and maybe you’ll inspire someone else to try their hand at it too!

Let me know if you set one up — I’d be happy to share the link 🙂

Thank you very much. I will seriously consider it in the wake of your encouragement.
Is being a more public figure with reputation better, or do you think I should write under a pseudonym?

There are benefits to both really. The Internet can be a bit of a scary place so sometimes it is nice to have the added security of a pseudonym while, at the same time, writing under your own name really personalizes (and personifies) the ideas.

I think for someone looking to just dip their toes in the water, I would recommend starting with a pseudonym. You can always claim the material down the road when you feel more comfortable

I am deeply passionate about ending these sorts of simulation exercises and have written and spoken about it quite a bit. Even the most well-intentioned exercises can have adverse results. This piece you wrote is spot on and I’ll be sharing it widely. Thank you for writing it.

Also, entirely not intended to self-promote, just wanted to share this piece I wrote about it: http://www.huffingtonpost.com/emily-ladau/i-wont-disability-simulation_b_4936801.html

Well said. I’m always afraid these experiences trivialize disability and make “solutions” seem obvious and immanently achievable. If we simply put more ramps and curb cuts the “problem” would be solved.

Hello,

My name is Melissa and I’m the associate editor of a website called TheMighty.com. I really like the way you articulate yourself and I think our site could benefit from your perspective. Please let me know if you’d ever be interested in blogging for us. I can be reached at Melissa@themighty.com. Thanks!