On Disability Unity

NextStep blog
WE ARE ALL IN THIS TOGETHER

Finding My Way: Journey of an Uppity Intellectual Activist Crip
Human Rights

Whose Planet Is It Anyway?
Supporting Allies

Insights

Sanabitur Anima Mea
Look Closer (my favorite post in the ’swarm)

Metamorphosis (Bob Kafka)
On the discrimination behind the institutional bias

Documenting The Action

PhilosopherCrip
Atlanta Action Days 1 & 2
Atlanta Action Day 3

The Roving Activist’s Blog
I am excited
Live from Atlanta

Today.com’s Official Disability Rights Blog
Action Day One: Conversations with Self
Action Day 2

Finding My Way: Journey of an Uppity Intellectual Activist Crip
Power is sexy and…

Composite: thoughts on poetics & tech
ADAPT in Atlanta kicking ass, taking names

Comment below to add a post to the ’swarm!

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Segregating people with disabilities in institutions solely because they need daily help, especially given the 21st century technology that can assist them and the widespread success of people with disabilities living in the community, is fundamentally unjust, immoral, overly costly, and, according to the Olmstead ruling, illegal under Title II of the ADA.

Olmstead, the case of two Georgia natives who wanted the state to stop segregating them, affirmed all Americans’ right to receive care in “the least restrictive setting” (i.e. not in prison-like institutions) and ordered all states to end unnecessary confinement of their disabled citizens (which it deemed illegal discrimination) at a “reasonable pace.” Most states have done little to nothing to comply. The institutional bias of the system is deeply entrenched, and even though the Olmstead decision came down 10 years ago last June, millions of people with disabilities are still kept out of sight, out of mind, stuck in institutions. “A right delayed is a right denied,” Martin Luther King, Jr. would say.

Georgia’s system, the focus of the Olmstead case, remains notoriously bad, insisting on expensive life-long institutionalizations that strip people of any choice in their daily lives, block opportunities to grow and become self sufficient, and kill hope. And most states are similarly awful, especially in the South. They refuse to heed the Supreme Court’s orders, reminiscent of their failure to follow school desegregation rulings “with all deliberate speed.”

We can no longer ignore illegal segregation and the community support services states must use to prevent it. We can no longer ignore Olmstead. We mustn’t put long-term care on the backburner and not include it in this year’s health care reform; telling us to wait another decade or more is deeply unjust. ADAPT will be in Atlanta, October 10-15, demanding that this change. You can help raise awareness around the Fall National Action by blogging!

The ADAPT Blogswarm, Fall ‘09, will collect posts raising the issues of the institutional bias, ablist and unjust institutionalization, lack of community-based services, long-term care reform, the Olmstead decision and posts highlighting ADAPT’s Fall Action. Blogswarm posts will all be listed here, on nickscrusade.org, on October 12.

Your blogging is incredibly important to raise awareness of these issues (often swept under the rug). Please contribute to the blogswarm!

For instructions on how to participate, see
ADAPT Blogswarm, Fall Action 2009

Thank you!

Nick

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Everyone please turn to Leviticus 21, kthx. In this week’s parsha, Emor, Moshe Rabbeinu tells us about some of the laws regulating kohanim (Temple priests).

After the admonition for kohanim to not have contact with corpses, it lists the various deformities and disabilities that would disqualify a kohen from performing his Temple duties. They include: blindness, mobility impairment, sunken nose, unibrow, broken or twisted limb, one limb disproportionate to the other, sores, and, of course, crushed testicles. If the Temple was excluding disabled priests, does that mean Judaism (c”v”s) is discriminatory and ablist?

Josh over at parshablog says one possibility is that this is a concession to the prevailing cultural attitudes of the time. DovBear suggests that this is just one of several “rules and requirements and presumptions that no longer fit anyone’s idea of morality” in Torah.

I don’t fully agree with either of these opinions. I think there’s nothing we can’t learn from, especially words of Torah (nothing is not relevant, and if you’re not able to find something to learn from in a chapter, you’re not looking hard enough). What can we learn from this? Well, to me, ablism means blocking people with disabilities from doing things we can do, assuming we have nothing to contribute, and stifling our potential. It doesn’t mean I get an equal shot of playing shortstop for the Yankees. Maybe a disabled kohen can’t drag a bull up the ramp to the sacrificial altar. And we have to remember that Torah was recorded during a time where G-d was smiting people as an example that even minor infractions should not be committed with the Temple service. This was a lot more important than a Yankee game, and if you were reckless in the Temple, G-d would be reckless with us (ie. smiting). In Torah, every tribe and every person has a role they’re born for, and that’s one lesson we can take away. And in this life of confusion, chaos and darkness, one who finds their purpose, their meaning, is fortunate indeed.

I’m not offended by the stringent requirements for kohanim. Disabled kohanim were never stripped of their title, and were still allowed to eat from the holiest of sacrifices (they got all the benefits of their role). Some were even allowed to perform the priestly blessing (source).

Leonard Nimoy made the "Vulcan salute" identical to the birkat kohanim (priests' blessing) except that the benediction is done with both hands, horizontally, to resemble the Hebrew letter "Shin." For more on this, Nimoy's inspiration for the Vulcan salute, see this article on TrekJews.com.

And unlike illegitimate kohanim, disabled kohanim continued to keep all the benefits, and all the priestly laws. To suggest a physical defect is a spiritual defect (as this commenter did) is ablist and false.

Also in Leviticus, those with skin disease never have to pay for their affliction (free health care). The Torah makes sure that anyone in need is looked after and cared for. Kohanim were responsible for properly caring for and overseeing infection control for the community.

People with disabilities are never excluded or discriminated against in the Torah. Isaac’s blindness certainly never diminished his authority as a Patriarch and leader.

In this 1638 oil painting by Govert Flinck, a blind and aged Isaac blesses Jacob to be the next leader of Israel

I see Torah as proposing a semi-Utopian system, where everyone matters, everyone has a role, everyone has a portion, not the cruel dystopia many paint it as.

Nick

Here is the PunkTorah commentary on this blog. And check out the video:

And to see all the PunkTorah videos, go to the PunkTorah YouTube Channel.

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As I noted here, ablism (discrimination based on ability) is one of the dumber forms of injustice.

It’s dumb because it’s based on falsehoods. Just because someone is in a wheelchair, doesn’t mean they’re deaf or have mental retardation. That man in a wheelchair you just (loudly) talked down to? Maybe that was genius astrophysicist Stephen Hawking, or one of the most talented computer programmers in your city. FAIL. You never know the amazing things people with disabilities are capable of, especially now that rapidly-advancing computer technology and the internet is increasingly leveling the playing field. Despite our abilities and achievements, we are too often condescended to, and treated as outsiders and lesser beings. What a waste.

Personally, I was able to enter college at age 16. Still, I am too often assumed mentally impaired, not taken seriously, or, most angering for me, am openly disbelieved by some of the hospital staff. This is where stupidity crosses the line from annoying to dangerous. “The feeding tube is leaking!” “No it isn’t.” “Yes it is.” “No it isn’t.” And when they discover the bed is wet from the leaking tube and they have to change the pads, my prior warning doesn’t even warrant mention, much less an apology.

My girlfriend (the amazing, the wonderful, the beautiful) blogs here about hospital ablism, people not taking me seriously, and one incident where a hospital administrator told her that allowing her to stay late to help me would be pointless because she’s disabled. Paradoxically, those who deal with disability professionally (those in hospitals, nursing agencies, etc.) are often the rudest, most anti-disability people you’ll meet, much worse than random people off the street or at work or school.

And now for rank idiocy! sorry to digress into silly season here, but I can’t let Blogging Against Disablism Day go by without posting the footage of Glenn Beck recently mocking Obama’s aunt’s disability (warning: contains extreme, brain-boiling stupidity). He’s essentially an 8th grade class clown, and here he’s mocking Obama’s aunt’s limp, and, more broadly, making fun of anyone sympathizing with people with disabilities. Ha ha, only a weak-kneed bleeding heart wussy would hesitate to deport a disabled person to Africa where nothing’s accessible!

Glenn Beck is stupid.

Glenn Beck is an idiot.

Society needs less ablist idiocy, not more.

Nick

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There’s a dark part of America’s past (and present) that few are aware of: government taking children from their families and placing them in institutions.

It usually goes like this: doctors and social workers identify a disabled child, and advise the parents to send the child to an institution to get “the best of care,” from “the experts” and “be with kids like them.” Sometimes they’d recommend parents “move on with your lives.” In some cases, most of them decades ago, children were made wards of the state and whisked away from their families, for “their own good.” We’re talking about young kids here, 5-10 years old, many of which had mild disabilities, perhaps CP, MR or autism, not needing intensive supports at all.

That’s where the ablism comes in. Just because these children are different, or need some help, they’re assumed to need locking up in institutions. The doctors and social workers aren’t aware that “the experts” they’re letting raise these kids are the nurses and aides most likely to resent disability and the needs it involves (more work for them) and most likely to brutally restrict and control kids (to avert any possibility of trouble or more work for them). That means the kids will be horribly stunted: boys will never able to touch a girl’s hair, girls never able to “play doctor” with the boy across the street, and no one able to sneak an extra cookie (each meal is strictly controlled). And if they find a way to do these anyway, their reaching of these developmental milestones will be demonized; they’ll learn to hate their humanity, hate the needs and trouble their disabilities cause the staff.  They grow up in what’s essentially a special type of prison, where the natural experimentation crucial for human growth is banned. Not only are they segregated physically, they’re segregated from normal human contact, from basic experiences, from growth, from life.  While I wasn’t raised in an institution, I was exposed to this mentality, plenty. Special ed aides would grab my manual wheelchair and pull against me spinning the wheels, to prevent me from straying from them (and interacting with other children) during recess, to ensure my “safety.”

••••

Each afternoon, at the city rehab hospital I live in, a yellow school bus pulls up out front. The bus is dropping off the institutionalized children who live here. You can’t help but wonder, “what will these children grow up to become?”  In my experience, from meeting those who moved to the community after the local institution (or “developmental center”) closed following the landmark 30-year-long Wyatt v. Stickney desegregation lawsuit, is that you can take the person out of the institution, but you can’t take the institution out of the person; their mind will, to an extent, forever be institutionalized.  They will never question authority figures, or take actions without the consent of an authority figure.  Some who got out are leading successful lives, with jobs and many things they could’ve never had in an institution (a great argument why more deinstitutionalization needs to happen NOW) but decades of success were robbed from them.  Their development was stunted, their independence has been stripped, and their mild mental differences became serious impairments, now requiring aides (they should maybe rename “developmental centers” “regression centers.”) It’s how they were trained, to be dependent.

America has set up this enormous infrastructure of segregation for people with disabilities, and it’s wrong. Why do we do this? It’s rooted in outdated, ablist ideas.  Institutionalization began in earnest in the 19th century, and picked up and expanded widely with the technology of the 20th century.  It was based on the false notions of that era, like the need to isolate the disabled in institutions far from the community in order to keep contagions at bay, put the vulnerable under care of “experts,” and the theory that “they’ll be happier around their own kind.”  The deeply-ingrained concept that “you’re different, therefore you should be segregated” is the pinnacle of bigoted ablist thinking, and it’s the underpinning of all this stuff.  And even with all these theories disproven, too many old institutions remain, sustained by inertia, special interest groups, and the lack of community-based alternatives.

It’s hard for me to blame the parents for consenting to send their kids to this fate when there are few, if any, community-based options to turn to. With little support, and confusion about what to do, it’s not surprising widespread institutionalization has happened. The state forces parents into a grim Faustian Bargain of necessity, something way too close to The Kinder Transport for America, forced to choose between sending children away, or leave them to some uncertain, horrible fate trying to raise them with no supports, no safety net.

Some families are now trying to find children lost to the gulags decades ago.

People magazine: Kevin Hopkins holds a photo of his lost sister

From People magazine:

(Newstands only; article not available on the magazine’s website.)

Families across the country are searching for loved ones with disabilities who were sent away to institutions years ago, often without warning or explanation.

Kevin Hopkins, 53, of Springfield, Virginia, is seeking his stepsister Janet, who was sent to an institution 42 years ago. “She was my best friend,” he said. “I just wish I could know where she was and see her again.”

Shawna Gagnon, 49, of Montgomery, Alabama said her sister Zena (Xena) was taken to a California hospital 43 years ago “where people hollered and were tied to the beds.”

Filmmaker Jeff Daly, creator of the documentary “Where’s Molly?”, has been working to find family links for the estimated 250,000 Americans who live in group homes or state institutions with no family contacts. He and the nonprofit ArcLink have built a relative search database that has already fostered more than 100 reunions.

Source: PatriciaEBauer.com: The Endlless Search

More institutions are closing under mounting allegations of human rights violations, but we need the community resources to make these outdated ablist models obsolete forever.  It’s obvious that the best environment for children is a natural family setting, but too many families are STILL forced to choose institutions, especially in the South (like my old home state of Alabama) where there are few community-based options to turn to.  The best thing for the child, would be to fund attendants from the community to assist the family in caring for the child in the home.  But home and community-based services (HCBS) are purely optional for state Medicaid agencies, not a mandated service under Medicaid law.  Meanwhile, it’s mandatory to fund the huge institutions that cost much more (often double or triple the expense) and (almost inevitably) neglect, set back and stifle human growth and potential.  The harsh inhumanity involved, demands change.  We are complicit in our government’s policies, and must demand better.  It’s time for the Community Choice Act, which would make providing home care mandatory for Medicaid too, and give people a real choice.  LET MY PEOPLE GO!!!

"LET MY PEOPLE GO!!" on silk, from jewishbazaar.com

A CCA Banner, from Mark Boatman's Blog

An ADAPT activist holds an "Our Homes NOT Nursing Homes" sign, at the "DUH City" Action, September 2008

Nick

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Remember, Blogging Against Disablism Day (BADD!) is this Friday, May 1st (though since it is on GMT–Britain–you might want to make your submission late Thursday).

Ablism (discrimination based on ability) is one of the dumber forms of injustice. Speaking out against it is the right thing to do.

Please blog about ablism/disablism this Friday.

Nick

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