I’ve been reading a bunch of your advice columns today, and I came across one in particular, from “Walking Without Rhythm” that struck a chord with me. I am not physically disabled, so I can’t say that I understand what you and this person go through on that account, but I do deal with a fair bit of intertwining depression/ADHD so I could identify with that aspect of the letter.
My question to you is, how do I help? I’d like to act in a way that makes life a little more pleasant for all y’all who have to deal with physical disabilities, without being condescending or seem as though I am pitying someone who doesn’t want or need my pity. I tend to smile at random strangers a lot, for the personal reason that it makes me feel good, does that help? I certainly wouldn’t belittle or harass someone who was obviously in pain, or decide to cross the street to avoid a disabled person. I feel kind of silly writing this, because I don’t want to come across as looking for a pat on the head for being a good person, when doing right by other people is everyone’s duty as a human being. Am I silly for asking? Are there some resources you could point me toward?
Dear Clueless Ally,
I’m so glad you wrote me. I am glad you had the bravery to write a letter that made you feel kind of silly (and you are NOT silly for asking), because I can guarantee you that at least twenty people saw your letter and thought: “oh, good! I’ve always wanted to know this but was too afraid to ask!”
So I’m going to give you (and those twenty people) some suggestions, but first I want to call into question one thing you’ve already said, and the assumption behind it. You wrote: “I’d like to act in a way that makes life a little more pleasant for all y’all who have to deal with physical disabilities.”
Embedded in this statement is an assumption that our lives are already unpleasant, and I think this is the crux of the problem with well-meaning able-bodied people: “How do I help?”
In most people’s minds (and I am not blaming you; you and I have been steeping in the same ableist cultural poison and I learned the same lessons you did), the very nature of being disabled is that your life is unpleasant and that you need help. A disabled person = a miserable, helpless person. While we are sometimes in pain or exhausted or miserable or find the day too damn much, this would describe a lot of people our society considers ‘able-bodied,’ as well. But only we are reduced to that: to our pain, to our fatigue, to our unusual movement.
This is because our culture has fed us the medical model of a person with disabilities: someone who is lacking. Someone who is sick, or is damaged.Someone who needs to be fixed by the Medical Establishment or, failing that: monitored, managed, and controlled by the Medical Establishment.Disabled people should spend our entire lives focusing on and attempting to ameliorate our physical bodies. Everything else should go by the wayside.Yes, this makes our lives miserable but since our very essence is one of misery what does it matter?
This model for disability is very dangerous. It reduces us to people who cannot lead interesting lives (unless endlessly pursuing a cure/doing physical therapy/visiting doctor after doctor after doctor is interesting to someone), or work, or parent, or take the damn bus. It creates for us an entire army of ‘experts’ who can control our movement and, in some cases, our freedom. And if we should be focusing on our impairments and only our impairments, why offer us jobs? Why allow us to parent? Why bother making transportation accessible?
“How can I help?” sounds so nice. But historically, the way “how can I help” has manifested itself has been: “How can I control you in the way I, an able-bodied person, think is best?”
Ways able-bodied people have thought ‘helping us’ was best: filthy, horrifying institutions from which there was no escape. Isolation. Constant medicalization of our lives. Heaving us around like dead bodies. Refusal of access to educational opportunities or jobs. Taking our children away from us.
It’s easy to believe that our focus should be on what can be done about our weird and frightening bodies if being disabled is, essentially, a miserable and helpless existence.
But in the vast majority of cases, this simply isn’t true. As a matter of fact, I’m going to go out on a limb and say that in cities in which we have decent accessibility infrastructure, we’re just as self-sufficient and have just as pleasant lives as the next person. Or, the next person who experiences daily prejudice and a lack of job opportunities.
I’d also like to point out that the reason some cities have decent accessibility infrastructure such as accessible buses, ramps into buildings, disability-specific transportation options, and educational options for disabled kids is not because able-bodied people wanted to “help” disabled people. It’s because we fought and screamed and threw our twitching, flailing bodies in front of buses in Denver, in Chicago, in Detroit. It’s because we organized and planned and wrote and protested and organized some more and crawled up the stairs of the Capitol.
There is a disability rights movement, and it has changed the face of the US and elsewhere, and it’s still going on, and NO ONE teaches about it in school. Nobody. It’s an invisible movement.
I bring this up to introduce you to what I think is a much more useful way of thinking about disability: the social model. The social model, in a nutshell, explains that the main problem with being disabled isn’t necessarily our impairments but instead comes in the form of discrimination: physical and bureaucratic blocks to employment and free movement, isolation and societal rejection (such as what “Walking Without Rhythm” wrote about so movingly), hatred and fear of bodies that act and function and move differently, and an environment that is made for people whose bodies and brains work in a way that ours don’t.
A great explanation of this is this blog post by Wheelchair Kamakaze in which he describes landing on a planet where all doors need four hands to open them. On that planet, all able-bodied people would be ‘disabled,’ because you would be unable to open perfectly functional doors or operate vehicles or even use utensils. He paints a very clear picture of what it’s like to be in an environment tailored toward other bodies.
So. I think a better question, and one you got into with your sign-off, is: how can I be a better ally to an oppressed minority?
There are everyday ways to interact with disabled people I have outlined before: only help after asking, and only ask if someone appears to be struggling. Chat with folks at the bus stop, if that’s the sort of thing you’d do with anyone. Act the same toward us as you would anyone else. Just like you’d do with any other marginalized group: ethnic groups, sexual and religious minorities, etc.
But so many of the awkward interactions I have with people could be completely reversed if the people in my vicinity were more comfortable with disabled people in general. I think it is no accident that my worst experiences with disablism (in which people have clutched their children closer when I pass or loudly and horribly encouraged me in my Inspirational Grocery Shopping) have been in wealthy suburbs where the citizens are unused to any sort of diversity at all and where most disabled people cannot afford to live (see above regarding: job prospects). The place I am most comfortable and no one ever stares at me is in my inner-city neighborhood which contains several group homes, several disability-specific apartment buildings, and better transportation and cheaper housing than other places: all of which raise the disabled population. When people are used to seeing someone who might be twitching and on crutches, such as myself, they are not as alarmed and they do not feel self-conscious about how to act.
So part of how you can be a better ally is to just get to know disabled people.A variety of us, so you are not uncomfortable and worried about how your reactions might appear to us.
But here’s the main way: educate yourself on disability issues, and speak up with us. Right now, we are engaged in a huge fight with nursing homes, which are lobbying Congress hard to keep us in institutions instead of in our own homes, in our own communities. Learning more about The Community Choice Act, and writing your representatives, would really help us in substantive and important ways. You could also learn more about the neurodiversity movement and self-advocacy for autistic people through organizations like the Autistic Self Advocacy Network that are fighting for representation on boards that determine the fate of autistic people all over.Google “nothing about us without us.” Read up.
Speaking up in the workplace or in social situations when you see/hear disablism is important, too. If someone is leery of hiring a disabled person, you can speak up. If you see someone sneering at a person who uses a handicap placard but no wheelchair, telling the sneerer they have no idea if that person has the lung capacity of a squirrel really would help us.
Think of us if you are helping to plan an event and no one has given a thought to disability access. Have they considered closed-captioning? Have they made the aisles wide enough for wheelchairs? Is there a quiet place for people who are overwhelmed to retreat?
In short: if you consider disabled people in planning, in hiring, and in your activism time, you are being a wonderful ally.
If you educate yourself on the issues, get to know more of us, and understand our take on the world, I’m betting you will feel a lot less awkward in social, work, or transportation situations and instead of thinking: “oh god oh god I just smiled was that condescending,” you’ll feel and act a lot more naturally, which is a great way to lower barriers and make all of us feel included.
This letter originally appeared in bitterempire.com on December 17, 2015.