How the Disability Community and its Allies Can Keep Fighting

Today I came across this thread of brilliant tweets from @Imani_Barbarin, who is known as Crutches&Spice on Twitter.

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  1. Sick of hearing people ask how DT teasing a disabled person didn’t end things. I have alternative questions for variety’s sake. THREAD>>>

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2. Why is it when media reports the killing of a disabled person the story is framed to empathize with the murderer not the victim?

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3. Why is everyone pro life until it comes to policies that actually allow disabled people to live?

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4. Why do people still refer to those services that help us live as “perks?”

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5. For @andersoncooper: why is it that I have less time to apply for healthcare than services have to understand the ADA after 26 years?

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6. Why is it that the only way disabled people come across some social timelines is in the form of damaging inspiration porn?

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7. Why are Ppl so miseducated abt the nature of ACA that they’re now shocked they voted for a candidate WHOSE PLATFORM WAS TO TAKE IT AWAY?

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8. How is it that so many people still ignore the high correlation between disability and race when it comes to cases of police brutality?

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9. So how is it that mocking a disabled person didn’t end things for DT? How is that the first question you asked?

 

Here’s the deal. Trump’s mocking of a disabled reporter was not okay. It upset me, just as those people who excused it upset me. But Trump’s plans and behavior spell trouble for people with disabilities far beyond simply mocking one, although, this may serve as the perfect symbol for his thoughts towards the disability: he doesn’t take us seriously.

It’s hard to explain to so many able-bodied people how policies affect my day to day life, when the vast majority of the public is so uninformed about what it’s actually like to have a disability. But put pretty simply, I rely on government programs and funding to receive the help I need to live. For the most part, this takes the form of personal care assistants, who help me with everything I cannot physically do for myself. Fact: Not all of the hours I need covered are covered. Governmental aide also comes in the form of Medicaid, which covers a lot of my doctors visits, medicine, and adaptive equipment. Fact: Not all of the adaptive equipment I need is covered. Social Security Supplemental Income is another form of funding I receive, which I use to pay my personal care assistants who are working hours that are otherwise uncovered. My situation is not unique. Every adult with a disability that is on the same severity level of mine relies on these same programs, and still has a large amount of money to pay out of pocket in order to live independently (read: not in a nursing home). This could be why, in 2014, it was measured that 28.2% of people with disabilities ages 18 to 64 in America were living in poverty, compared to 13% of people without disabilities in America of the same age group.

Trump and his company want to defund or severely cut back many of these programs. Perhaps the most talked about program he wants to cut is the Affordable Care Act, which, although it is not perfect, serves many people with disabilities. In any major discussion of Trump’s plan to cut this, those with disabilities who are on this plan were never discussed.

A couple days before the election a post was made in a large Facebook support group for family members of people with the same disease that I have regarding a political post that had been removed by the moderator. I didn’t see the original post, but I thought it strange that politics seemingly couldn’t be discussed in a group that was claiming to be a support group for those whose lives are directly affected by politics. I commented this, saying the reality is that politics affects the lives of adults with disabilities, and that discussion should be encouraged. The response I received was that political discussions had no place in this group. And maybe political discussions that have nothing to do with disability don’t have a place in this group (more on this later), such as the legalization of gay marriage, but it is incredibly damaging to pretend that politics play no role in the lives of the disabled. Do you see the disconnect?

The Facebook group example is just one representation of the vast majority of our society refusing to take the time to understand how this election and how a Trump presidency is going to affect the disability community. When I was engaging in conversations with friends and acquaintances before the election about why this mattered to people with disabilities, I was often told by whoever I was talking with that they didn’t want to discuss politics. How, then, can I make it clear to you that this isn’t just politics, this is peoples’ lives, mine included?

I believe that it is not the responsibility of a marginalized individual to educate mainstream society about the unique barriers and issues they face; I believe that this responsibility lies on the public, on those who are uneducated on such things. I believe this because it is simply unfair to ask marginalized people to set aside all of the things they already have to do in order to survive just so that they can explain something to you that you should be able to figure out for yourself. I believe that the kind of society I want to live in, and the kind of society we should all live in, is one in which those of us who are privileged in some ways seek out what this means, and try to find ways to help those people who do not have that same privilege.

That being said, I am comfortable being an educator on what life with a disability is like for me. I don’t mind using my voice to discuss issues faced by the disability community, although I know this is not my responsibility. But sometimes, when I am met with so many closed ears and turned heads, it feels a bit like this:

Person in marginalized group: You don’t understand what it’s like to be _____.

Person not in said marginalized group: You’re right, I don’t. Educate me!

Person in marginalized group: Ok, here’s some examples of the struggles I go through on a day to day basis, and some of the reasons the challenges continue to exist.

Person not in said: That can’t be true, you must be exaggerating. And that doesn’t cause those issues.

Crutches&Spice wrote an incredible article about a week after the election detailing ways in which able-bodied people can be allies to those with disabilities in the era of a Trump presidency. Now, a little over a month after the election and two days before the electoral college meet to cast their votes, I’d like to offer my own thoughts on how the disability community and its allies can continue to fight.

  1. Listen to people with disabilities who are feeling fearful about the upcoming four years. Don’t dismiss these fears as exaggerated or false. Realize that people with disabilities know more about the reality of living with a disability than any able-bodied person, whether doctor, friend, or parent, ever will.
  2. Include people with disabilities in your discussion of who will be affected by Trump’s presidency. This isn’t a competition of whose plight is going to be worse, this is an honest conversation of whose lives are going to be drastically changed, a conversation that people with disabilities are far too often left out of.
  3. Become politically engaged. Help people with disabilities fight for equal care and adequate funding by talking with your family and friends about this. Call your representatives and senators, telling them it is their responsibility to represent all of the people in their district, not just the able-bodied. Realize that the Americans with Disabilities Act is the absolute bare minimum that is required, and that it is often not met. Understand what Supreme Court decisions such as Buck v. Bell in 1927 mean. Research unemployment and disability, and realize that the minimum wage that most people seem to agree as being too low to live on ($15,080/year) is nearly twice the amount of the maximum Social Security income benefits a single person with a disability can receive ($8,796/year).
  4. Understand that the disability community is incredibly diverse. It is not just straight, cisgender, white men. We are are all genders, all sexualities, all ages, all races, and all backgrounds. Many of us who identify with a marginalized group besides the disabled are fighting a double fight for our identity and right to exist. Likewise, while I would never pretend to understand what it is like to be in a marginalized group I am not a part of, I do know that there are similar barriers that all marginalized people come up against. Those not in the disability community and those within the disability community need to realize that the fight for one minority should be the fight for all minorities. We cannot pretend that equality exists for all if one group is still being discriminated against.

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