Recently I was in an online disability discussion forum for disability X. One forum member, who I’ll call Jane, chided the other forum members for not contributing more money to a fundraiser that was underway to fund efforts to find a cure for disability X. Jane went on to say that finding a cure for disability X should be the biggest priority of everyone in the forum.
Now, disability X is never fatal in and of itself, but it can prevent you from working. From those premises I concluded that it was really messed up for Jane to be schooling people, many of whom can’t work and therefore have income limitations, for not donating more money that they may not have to fund a cure for a non-lethal health condition.
Now I realize that not being able to work may lead to death, especially in countries like the US, where financial assistance programs for disabled people are paltry or non-existent, and that was part of my point. But I also realize that some people live with disabilities that not only prevent them from working, but can also at any moment kill them in their own right. And people with those types of potentionally lethal disabilities are among the most cherished people in my life.
So, in what I now realize was a somewhat socially inconsiderate way, I responded to Jane’s post by reminding her that not all people with disability X can or should make donating a priority. I used a personal example and said something to the effect of, “I didn’t donate until very recently because I had to prioritize using my financial resources to help keep a friend from being killed by disability Y. I don’t agree with the assumption that donating to this fund should be everyone’s biggest priority.” I imagined that would be the end of it. Jane might agree, disagree, or ignore me and life would go on, at least for those of us with non life threatening health conditions.
Imagine my surprise when the gates of Hades swung open and a flaming Facebook Messenger note landed in my inbox from the moderator (M) of the group. I was told that my post had been deleted and a demand was made for me to explain why I had thought it appropriate to berate Jane, who had generously offered to match donations for the fundraiser. I responded with something along the lines of, “I didn’t berate Jane, but I wrote what I did because her post reeked of financial privilege.”
I was somewhat unprepared for the intensity with which hellfire and brimstone can scorch a person’s laptop. Messenger continued to rain down a cascade of flaming messages from M castigating me for using the word privilege and again accusing me of berating a benevolent, generous, selfless matching donor. M told me that a discussion of privilege had no place in that forum. M even threw in a Joyce Meyer quote admonishing me to not take offense even if offense is given. Ha! I’d never heard of Joyce Meyer before. But a quick Google search revealed to me that she seems pretty big on blaming individuals for having sane human reactions to injustice issues.
And that is where this blog post really jumps off. Because I absolutely disagree with M that a discussion of privilege doesn’t belong in a disability forum.
According to the Cornell University 2014 Disability Status Report for the United States, the poverty rate for people with disabilities is 28.1%, while the poverty rate for people without disabilities is 12.2%. Since poverty affects more than 1 in every 4 disabled persons in my country, I think that discussions of poverty and privilege in disability forums should be front and center.
M had reacted to the word privilege like it was the dirtiest obscenity that I could have written. M even challenged me to point out how privilege had supplanted M’s hard work and resulting presumably stable financial position. Now I hadn’t been talking about M at all, but once the pesky P word came out, M sure took it personally.
There are a lot of misunderstandings about the P word, and it is usually most misunderstood by those who benefit from it.
Having privilege does not necessarily mean you are a bad human being.
Having privilege does not necessarily mean you have not worked hard for what you have.
Having privilege does not necessarily mean that you are an oppressor.
But you can have privilege and also be bad, lazy and oppressive, and you are way more likely to be any or all of those things if you refuse to acknowledge your privilege.
I have privilege. I have financial privilege, which is basically privilege by proxy because of my well paid spouse. I have privilege because I live in a mostly safe neighborhood. I have privilege because I am educated. Although I am a person of color, I have privilege conferred to me by my light skin. I have privilege because I am a native speaker of English in a primarily English speaking country. I have yet more privilege because the way I speak English is considered ‘standard’ as opposed to being regional or of a dialect associated with a minority group. I could go on and on, because I’m really a very privileged person.
Nothing in the paragraph above means I haven’t worked my ass off. I went from homelessness to college graduate largely due to my own efforts. I’m a sexual assault and child abuse survivor. I’m a medical abuse survivor. I am autistic. I have severe hyperacusis. I also have severe central auditory processing disorder, which makes me functionally deaf in situations where there is background noise. My life has not been easy. But my privilege exists despite the reality of any of those things.
Acknowledging my privilege is acknowledging that even though I worked my ass off, and it has been a damned hard road, that I still have or had qualities that removed from my path some of the obstacles that may stand in front of others. Despite my hard work I will never look another person who has faced different or even the same obstacles in the eye and tell them they should have ended up where I am, at a place of privilege. Because that’s bullshit. It’s demeaning, and it’s wrong.
Now I realize that distinguishing disabilities into categories of immediately life threatening and not immediately life threatening is a delicate thing to talk about. Like I said, if you can’t work, you might very well die. My point isn’t to create a hierarchy of disability badness and divide the disability community, but rather to point out that there are lots disability dynamics worth discussing, rather than ignoring.
All people involved in creating or advocating in disability forums need to be open to discussions about how some of us are dying because we don’t all have access to the same resources, regardless of how hard we have worked or would be willing to work if we could.
Looking back, I don’t think necessarily think Jane meant to make anyone feel terrible, but I can’t be sure. I certainly don’t think my response berated Jane. If it somehow could be perceived that way it was not my intent. I intended for my response to prompt thought and reflection on the potential impact Jane’s words might have on disabled people who cannot work or don’t otherwise have financial resources and therefore cannot offer donations. If I could write it again, I would word it differently. I’ll be the last person to claim to have never typed anything insensitive. So while my choice of words may have been less than ideal, I stand by my sentiment. Discussions of privilege in disability forums should be central, rather than censored, because some of us are dying out here.