5. Because we need to support the decisions of overburdened parents/caregivers of severely disabled children right up until the time when their decisions require public funding for adequate and affordable in-home supports.
It’s feels like it’s 2007 all over again, what with “growth-attenuation therapy” for severely disabled children – many of whom are girls – being back in the news. And today, just like then, people with disabilities are trying to make this all about them. But there’s no unrecognized ableism framing this “ethical debate.” It’s not as though fearful parents who really do care about their children — who really are severely disabled — are being given an absurd and brutal choice:
When your organization’s fundraising tactics undermine your mission – as dehumanizing your own people does – your fundraiser efforts can only be judged a failure. No matter how much money you raise.
This Labor Day weekend has me feeling celebratory because there’s no Muscular Dystrophy Association (MDA) Telethon on the air for the first time in 49 years.
This is great. If you’ve got that particular diagnosis. If you don’t, you may still have a problem. If, say, you’re diagnosed with autism. People with autism are still dealing with the same dynamic of destructive messages in the fundraising that purports to help them.
Criticizing how funds are raised generates a whole lot of anger if the critics are among those who are said to benefit from the efforts. That’s why cross-disability solidarity, disability history, and telling our own stories are so important. The medical model of disability would keep us separated by diagnoses — different and disconnected — but the social model can bring us together — unique and united — through common concerns for our rights.
I’ve said it before and it’s still true: “I look at fundraising as a means of not just supporting social change but in promoting it as well. How we raise money says a lot about our attitudes toward the cause we want to fund.”
Dear Respironics Bi-Pap S/T,
I’m feeling like such a loser because I can’t get hired for even one job and all I’m suddenly hearing about is this big push for disabled people to get employed. And then there are disabled people like this guy who act like it’s just my attitude that’s the problem.
Feeling like an Uninspired, Unmotivated Kid with a Disability
First, take a deep (assisted) breath. Now let’s get your head right: Go watch the late (god, I hate writing that) Stella Young’s epic take-down of inspiration porn.
Sure, you’re going to hear that all landing a job, or whatever, really takes for a disabled person is to adopt the All About M.O.I. approach. That narrative certainly has the charm of simplicity, plus it comforts you by giving you all the control. Meaning: If you’re not yet working, for example, it’s just that you’re not trying hard enough to:
Overcomerate your disability
Inspirate all who meet you with your “What, me disabled?” attitude
But there’s a more accurate name for this narrative: Magical thinking.
“As a Respironics Bi-Pap S/T, I support you venting because you have to manage your pressures and everyone’s settings are different. Venting, moreover, leads to bitching and bitching can lead to some very interesting shifts in what you think personal responsibility can accomplish versus what takes political action.”