The Top 10 Reasons Why Medically Stunting the Growth of Girls With Severe Disabilities Continues To Be an Ethical and Well-Thought-Out Solution To the Problem of Financially Stunting Public Funding for In-Home Social Services, Which Is…Huh, How ‘Bout That.

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:

Continue reading

2016 Ramp-up to the White House: 5 Questions for the Democratic Candidates for Crip-in-Chief

“If Lincoln and FDR were hanging out with a bunch of crips and you wanted to join them, what would you bring to the disability table?”

While voting access will continue to be a disability rights issue,  here are key questions that address your readiness to be Crip-in-Chief. Please note that any answer in the form of inspiration porn will immediately disqualify you.

Question #1:  It’s 3AM in the White House (as it is everywhere in that time zone). The phone rings.  It’s Sylvia Burwell, the head of DHHS that oversees the Centers for Medicare and Medicaid Services (CMS). CMS is STILL sending printed forms to blind consumers and crips are not just pissed but suing. Explain how you get that this is emblematic of being a person with a disability: Most people think disability = sick = great healthcare access when it does not. Then explain your civil rights approach to such structural disability discrimination, how you will engage cross-disability advocates, and how your Obamacare/single-payer system will prevent such debacles.

Question #2:  Human worth in our country has long been measured by participation in the paid workforce. How will you promote a culture of respect backed by legal protections  for people who are unlikely to join or rejoin the paid workforce — a vast coalition that includes some adults who identify as “disabled;” adults with chronic health conditions, survivors of trauma, violence, and conflict zones;  many older people and veterans, parents (particularly mothers); and all (we hope) children.

Question #3:  Young people with disabilities today are being told that they should expect to find be a paying job. This is great — sort of.  Their success is presented as being fundamentally a matter of overcoming their own attitudes and disabilities. But many — particularly youth of color — are systematically denied an education and shoved into the school-to-prison pipeline. How are you going to dismantle the infrastructural  and intersectional barriers to employment that persist: lack of access to education,  housing, transportation, in-home supports? How will you shift the country from a “special needs” lens to an “equal rights” lens?

Question #4:  Explain how, as a pro-choice candidate, you would ensure women with disabilities and all queer people with disabilities (quips!) truly have choices with regard to their own sexual agency, pregnancy, parenting, and custody disputes. And how would you address the implicit ableism that frequently presents the decision to bear and parent a child with a disability as a cost-benefit analysis — and a rigged one, at that?

Question #5:  In a time of economic inequality, lost faith in a for-profit healthcare industry, and increasing elder abuse, assisted suicide legislation is gaining ground as a personal liberty rather than a public health issue.  Again, this is a question about policy  and medical standards of care affecting millions of diverse people, not an individual belief system. Do you support laws that indemnify physicians who prescribe lethal drugs but don’t require any medical provider or trained personnel to monitor, attend, follow-up if/when the consumer uses them?

Bonus Question: Two transformative presidents, Lincoln and FDR, lived with disabilities. Like many Americans today, neither identified as “disabled,” but their respective Administrations nevertheless reflected a deep understanding of another term for “disabled”: “vulnerable.” If Lincoln and FDR were hanging out with a bunch of crips and you wanted to join them, what would you bring to the disability table?

Remember: Our civil rights matter and so do our votes!

 

 

Working While Disabled: All About M.O.I. Versus the T.E.A.M. Access Approach

BIPAPST

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.

Signed,

Feeling like an Uninspired, Unmotivated Kid with a Disability

Dear FUUKD,

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:

Motivate yourself

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.”

Continue reading

Voters with Disabilities Need Better Access to Polls

For people with disabilities, voting alongside our neighbors should be a right not a privilege. But accessible polls are still considered a luxury that a nation at war cannot afford.

More than one out of five U.S. adults with disabilities have been unable to vote in presidential or congressional elections because of barriers at, or getting to, the polls, according to a September study by the National Organization on Disability. This translates into more than 8 million potential voters.

These are not new problems nor are they unknown to voting officials. A 2001 General Accounting Office study reported that 84 percent of surveyed polling places had a barrier that prevents a person with a disability from voting.

Continue reading