On Thursday, Rachel Maddow asked “Who campaigns on gutting the American’s with Disabilities Act?” in a segment that included no interviews with disabled people.
She asks the question and seems to understand that the answer is “no, one” but she fails to ask or investigate why no one would ever openly say
“Send me to Washington, I’m going to stick it to disabled people. Send me to Washington and when I take my votes, you’ll see blind people, and people in wheelchairs being hauled out of the gallery in the house and arrested because I’m taking away the most important parts of the most important legislation that has integrated disabled people into mainstream life and American public accommodation”
or have an
“I’m a wheelchair user’s worst enemy caucus”
but still, vote in favour of legislation that will invariably harm disabled people.
Because, to be clear, this question isn’t just about the HR 620 vote that Maddow is addressing in that segment. That’s just the latest example of the say one thing but do the opposite phenomenon that is an all too common aspect of disability-specific legislation and policy in the United Staes and beyond.
This phenomenon was also front and centre in every attempt to repeal the Affordable Care Act.
It is present in the continuing controversy about austerity measures and benefits cuts in the United Kingdom.
It can be found in the fact that Toronto’s Transit Commission is unlikely to meet the goal of making all subway stations accessible by 2025 as the Access for Ontarians with Disabilities Act (AODA) requires.
This is a really common thing. You ask a random sampling of nondisabled people if they support more rights and opportunities for disabled people and the majority if not all will emphatically respond with a “yes”
If you ask them to follow through with the actions needed to make that ideology a practical reality, suddenly they’re either no longer available or they start making excuses.
There are a number of factors at work here, to create this paradoxical reality where disability rights are being clawed back or are under threat and yet most people when asked will passionately claim that they love disabled people and want them to thrive. It would take more space than I’m sure you have attention for to go through all of it (it could fill several books) but I’ll try and go through a few of issues at play. It all boils down to a single idea though.
The bar for what constitutes solidarity for disabled people is so low that simply not actively hating us is considered a radical act. Put another way, people have convinced themselves that simply reacting with the appropriate emotion is considered an act of resistance. As opposed to actually acting to resist systems that oppress disabled people.
Some of this is culturally constructed. One of the big reasons people can say one thing but let the opposite thing happen is because of how we understand poverty.
Western cultures all generally have some kind of understanding that there are portions of the population that are going to require assistance. They may differ on how they think those people should be helped. Should the government be in charge? Should it be nonprofits? Should we leave it to religious institutions?
Ultimately, who’s in charge is irrelevant because inevitably people are fine with the amorphous idea that people who are poor, sick, disabled, or elderly need and deserve assistance. Problems show up as soon as people start to act on those ideas and the need is too great for the resources available. Instead of looking for more resources, people start debating about “who really deserves to be helped”.
That’s where narratives of the lazy poor or benefits cheats come from. Not because those are widespread phenomena but because doubt is useful to people who either don’t know how to help or feel that too much is being asked of them. So they come up with excuses about why the person who needs help isn’t really deserving after all.
Disabled people have long found themselves firmly in the category of people deemed worthy of assistance but they often don’t get it. Consider the “ugly laws”, a set of policies and bylaws often incorrectly assumed to ban disabled people from public spaces outright. They were, in fact, more accurately anti-vagrancy laws. They were often premised on the idea that disabled people were justified in begging. The problem was they were convinced that people were faking disabilities to unfairly gain sympathy.
While that undoubtedly did happen it likely wasn’t as widespread as people thought. The suggestion that, that beggar might be faking his war wound was enough doubt to allow people to not only feel justified but righteous in not giving the poor money. “The ugly law” also allowed for people who were begging to be removed from the streets. Often specifically under the guise of removing the “riff-raff” so that the truly deserving poor would not be disadvantaged.
That dichotomy of the deserving and undeserving poor allows for people to maintain the idea that they want to help poor and disadvantaged people (the deserving poor) while putting up ever more restrictive barriers to getting access to that assistance (
the actual poor…excuse me the “deserving” poor).
A lot of social services are delivered with expansive mission statements that do not seem to match the output of those services.
Disabled people, in general, have theoretically maintained “deserving” status throughout the history of social services in the last few centuries. Yet we remain underserved.
The rhetoric never seems to match the output.
Consider how British Prime Minister Theresa May talks about Personal Independence Payments (AKA PIP a financial benefit for disabled people in Britain) in the midst of real concerns over the impact of cuts. These statements were made in the context of there being clear identifiable harms happening as a direct result of government policy.
“If you look at what we’ve been doing on disability benefits, what we have done is look at focusing disability benefit payments on those who are most in need. In fact, we are spending more on disability benefit payments than has been done by any government in the past,” she replied.” (emphasis mine)…
“We have changed the way that disability benefits have been paid and I know there are some issues that people continue to raise about assessments that are made on those payments. But we will continue to be moving to a system that ensures we are supporting those most in need.” (emphasis mine)
In the face of cuts, the official line is still “the people who need it are getting help” the implication is thought that the people who saw their payments cut or lost benefits altogether are no longer in need. So, if they complain they are lazy scroungers.
It doesn’t matter that the restructuring of benefits did not come as a result, a large scale movement of disabled people into work. People were not becoming spontaneously cured. Their needs didn’t change. The only difference is how the government defined them.
People also can’t seem to remember that disabled people deserve access to public spaces the second money comes up. It’s always too expensive to make things accessible. That’s the basic crux of HR 620, the legislation seeking to gut the ADA.
It’s just really unfair that people have to actually make an effort to make their businesses accessible. It’s a step too far. Can’t we all feel really good that the ADA exists? Do we really have to follow it through? Can’t we just bask in the glow of the intentions behind it?
Though as the Toronto Transit example points out even keeping accessibility legislation as is won’t stop people from not following through with its requirements if they can claim it’s too expensive.
I wonder sometimes how much it costs to build steps. To pour the concrete for that one step into a building. How much do stairs cost to go between floors? How much does building the accessibility of nondisabled people cost? Is it more than a ramp? Is it more than the lowered sink and tilted mirror in the bathroom? Did the other sinks and mirrors cost so much more? or is it just that the things that accommodate disabled people in those spaces are always seen as extra?
Disabled people are a cultural paradox. We are both widely considered deserving of rights and dignity but if we are denied them, little is done and excuses are made.
The fact that disabled people are now more likely to demand meaningful inclusion and not simply settle for the subsistence of charity has also challenged the historically paternalistic view of disabled people.
They are supposed to save us. Often from the ravages of our own bodies and minds. We are not supposed to say that we really need saving from exclusion and systems that keep us in poverty.
Unfortunately, people still look to charity as not only the best way to assist disabled. On this front charities are fundamentally failing the people they claim to want to help. Awareness is big business but the bar is unfortunately not set at meaningful understanding of the cultural and economic status of disabled people. They instead far too often ask only for sentiments. In short, they ask for nondisabled people to affirm that they do not hate us.
From the Cerebral Palsy Foundation’s functionally meaningless “Just Say Hi” campaign which basically asks that people prove that they are not afraid of disabled people by saying “hi” to them.
It doesn’t interrogate why people are uncomfortable around disabled people. It doesn’t question whether disabled people want to be said “hi” too just because they’re disabled. It doesn’t consider how this campaign contributes to a toxic culture of voyeurism that strips disabled people of privacy.
Easterseals has recently rolled out its Celebrate, Don’t Separate campaign which is supposedly about changing the way people see disability. The campaign is filled with the voices of disabled people explaining how they want to be seen.
What action then does Easterseals recommend people do?
Do they want you to call your government representatives and demand action on inclusion in the workforce or in education?
Do they want you to consider ways that you can make your home/workplace/school more accessible?
Do they want you to donate money to create a fund to invest in accessible infrastructure?
They want you to take a photo of you hooking your index finger with someone else’s and posting on social media.
I can’t think of a more empty gesture.
We already know that people find it all too easy to express warm and fuzzy sentiments about disabled people. It’s the work of making those sentiments a practical reality that they have can’t seem to grasp.
Empty gestures that lack meaningful action only reinforce the idea that conjuring up the right emotion is a radical act. It lets people think that they are either helping or at least not contributing to the problem as long as they can call up a warm and fuzzy feeling at the general concept of inclusion without having to create it. The fact that we don’t live in a world that can live up to the intentions of existing policies and legislation is largely irrelevant.
Hell, we live in a world where those intentions are held up as evidence of success even as they clearly haven’t been lived up too or are being actively undermined.
Any campaign built on recruiting sentiment instead of action needs to be abandoned.
If you claim to care about disabled people and our rights, be prepared to act in defence of them.
Here are some things that you can actually do.
Call politicians about bad disability-related legislation.
Attend protests in support of disability issues. Don’t just gasp and clutch your pearls when ADAPT activists are being arrested and dragged out of their wheelchairs. If they get arrested, you should step into the protest in their place.
Donate to charities and organizations that are run by and for disabled people
Support disabled content creators. Put money in the hands of disabled people.
Do not hide behind a generic feeling of fellowship and good intentions. Make sure those intentions are matched by measurable outcomes.
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