If you live in the US, and even if you don’t, it’s been a strange week. The whole country is talking about the election, and there has been a lot of talk about how the change is going to affect various groups of people. For the purposes of this blog, I will focus on the chatter that has surrounded people with disabilities.
I don’t need to belabor that families like ours have a strong interest in things not getting worse for our kids. Like many others, I watched the Huffington Post interview with Ari Ne’eman, head of the Autistic Self Advocacy Network, which is run by people on the spectrum.
In the interview, Ne’eman outlined some of the strong concerns that need to be addressed. Based on the campaign promises we have heard and also on proposals to reduce federal spending, the disability community has good reason to worry that large cuts to Medicaid spending will be detrimental to wellbeing and health. About 15% of Medicaid recipients, approximately ten million people, have disabilities. If implemented, Medicaid cuts will affect people’s ability to access basic healthcare, in-home supports that allow them independence, and group home placement. For those whose disabilities don’t rise to the level of the SSI pathway, they could end up getting little to no help. Ne’eman very bluntly explained that we will end up seeing a greater use of emergency room services, and also a sad surge in the school-to-prison pipeline. People who don’t get supports do not fare well when tossed out to manage on their own.
Horrifyingly, one of the consequences may also be the rolling back of medical confidentiality rights. NO.
My very articulate and beloved online community of friends has a catch-all phrase to critique this attitude that everyone must find a way to improve their own circumstances–we say “because bootstraps.” It comes in very handy. People shouldn’t use government funding “because (everyone is supposed to pull themselves up by the proverbial) bootstraps.” Etc. The trouble with this line of thinking for the disability community is the obvious one–they need the help whether it is morally pleasing to hear or not; and even if the family steps in to help, they cannot do it all.
It renders me almost inarticulate with despair to think of how much disability families have to contort ourselves “because bootstraps,” and even after our kids reach adulthood, and we reach old age, there may not be a pathway to dignity, supported adulthood, and a lightening of the parental load. Excuse me for the stark picture, but what are we asking elderly parents to do? What if we break our hips while assisting our kids? What if we die before our kids get a chance to adjust to a group home? What are we asking of our other children? That they don’t develop careers, meaningful relationships, or any ability to travel? What if there ARE no siblings? And most importantly, what are we asking of the disabled? That they watch themselves become an eternal burden? That they accept the complete loss of dignity? That, because of interrupted services, they bounce from one situation to the next, vulnerable to abuse and neglect, slowly losing all sense of hope for a meaningful life?
We cannot afford to turn away from these questions. Disability rights are one of the measures of a society’s moral compass, higher than the politics of the day. Ableism, or discrimination in favor of able-bodied people, cannot be allowed to reign unchecked. Even if there are no plans to implement such severe funding cuts in reality, and it was just a campaign promise, what does it say about our society, that we can posture for attention on the backs of the disabled?
Almost our whole day today was spent within the disability community. We attended A’s parent teacher conference and we spent a huge chunk of the time talking about assistive technology. Then we brought him home and romped with him and fed and watered him. And we attended a talk by LeDerick Horne, who spoke passionately about people with hidden disabilities learning to walk the path of pride. The whole time, I kept thinking about how, while we are now fully immersed in this world, there is a world out there where people don’t have to think of these things much at all.
In that outside world, life happens at a different pace. People live rather more spontaneously, perhaps. And the very perceptive ones remember to crack the door open for us. We appreciate you. Very much. And while I did not relish the idea of bringing politics onto my blog, I couldn’t ignore what was on my mind and write about some other gentler topic. I hope you understand, dear reader. And I hope you know how much I value your readership.
Ne’eman, Ari. Interview. HuffPost Politics. Huffington Post. Washington, D.C.: November 15, 2016. Facebook Live Broadcast.
One thought on “33. Because Bootstraps”
I think it is entirely appropriate to bring politics onto your blog. Disability IS political, and it is very much a social justice issue. People are disabled by a world that is structured for certain types of bodies, which are in turn constituted as able by those structures. I agree with you completely that there is much to be concerned about and I hope that you and other advocates are able to use all the means you still have access to in a democratic system to ensure that disability families live peaceful and productive lives.
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