Thursday, June 27, 2019

The Kelsey Honors the 20th Anniversary of Olmstead

wheelchair, and a bipap mask; a white man with brown hair in an undercut and a mustache & beard; and a Black man with very short gray hair.
Alice Wong, John Marble, and Leroy Moore
[image: Stylized photo of an Asian-American woman with bobbed black
hair, a motorized wheelchair, and a bipap mask;
a white man with brown hair in an undercut and a mustache & beard;
and a Black man with very short gray hair.] 
There are few better ways to spend the evening than at an event for inclusive housing initiative The Kelsey, in celebration of the 20th anniversary of the Olmstead decision—"the most important civil rights decision for people with disabilities in our country's history"—with an amazing panel of disability advocates: Alice Wong, John Marble, Leroy Moore, and Micaela Connery. We were lucky enough to do just that last night, and now we'll share what we learned with in this lightly edited transcript of our live-tweeted coverage of the event. 

Listening to Alice Wong of Disability Visibility Project talk (with a dash of salt) about why needing supports doesn’t negate innate independence & autonomy. And how public funding of supports keeps PWD like her in the community, & out of institutions. Even when it’s not easy—& she still feels vulnerable.

The annual redetermination process is laced with anxiety for people who depend on it. And it is a poverty trap! She can’t earn more than $2K (which is less than 2.5x the poverty level) without losing benefits. So she has to pass on paying opportunities all the time.

This is not in keeping with the spirit of the Olmstead decision, e.g., a lot of disabled people do not have the freedom to move between states, because anchored to state-specific benefits.

And community based services (HCBS) look very different state-to-state (though there’s never a barrier to institutionalization!). And most states still enable sub-minimum wage for PWD, which keeps the poverty trap cycling hard.

Did you know: People who depend on SSI often can’t get married, because that means their benefits will be reduced? There is no marriage equality for many disabled people.

Recently, a high-profile story of Anna Landre, a Georgetown student who had their support hours reduced resulted in those hours being reinstated. But how many other PWD have support hours arbitrarily reduced without any recourse or resolution?

There are also social and physical barriers to PWD taking part in their legal right to voting, e.g., every SINGLE US presidential candidate’s website is inaccessible to Blind people. IN 2019. #CripTheVote

Every disabled person can have the life they want!

John Marble is feeling a bit abashed in having to follow Alice, which is totally understandable.

John is the founder of Pivot Diversity. Talking about how even though he’s never been institutionalized, he’s always had a fear of institutionalization. Which, turns out, is not actually that irrational, because most autistic people his age & slightly older WERE.

Example: Darryl Hannah was diagnosed #autistic as a child, but was able to evade institutionalization because her mom was able to homeschool her until she was ready to attend school with her peers.

John says that he always feels like he is one step away from losing everything because he’s autistic—and in talking with other autistics, he’s not alone. It is a stark fear, shared with many autistics.

The number of disabled people killed by police, especially PoC, is a bracing reminder of how far we have to go even 20 years after Olmstead and the ADA.

So John does not want Institutionalization to be the path for the future. At the very basic level, PWD have the right to live in the community. Not just reside. LIVE.,

John is now throwing shade on people who use “the voice” when talking to autistic people.

He wants other autistic people to have the right to be DULL and BORING. Per James Baldwin on the bizarreness of perceiving difference as bizarre.

PWD, autistic, and neurodivergent people deserve to be integrated into society and as normal as anyone else!

Now Micaela Connery of The Kelsey is talking about the 20th anniversary of Olmstead, and how everyone always assumed her cousin Kelsey, who was a disabled person with high support needs, should be institutionalized—and how it was a life-long fight for her entire family to keep her in the community.

If you read the fine print behind the ableist parts of Olmstead: No matter how high a person’s support needs are, they have the RIGHT to live in their own damn community. (I may be paraphrasing.)

Living in the community doesn’t look the same for everyone! Whether in the general community, living, employment, school—but the baseline is the same. Everyone belongs.

Even when institutions are surrounded by rolling green hills and aesthetically pleasing environments, when people have no control over their schedule and autonomy, those differences really don’t matter. Institutions sap their residents’ souls.

Now: Leroy Moore of Krip Hop Nation. He used to live in San Francisco, but he got gentrified out.

Poor Magazine has been fighting against institutionalization/eviction of poor people and elders. Sometime successfully, but sometimes landlords blocked. And elders died from the stress.

Under former mayor Willie Brown, San Francisco wanted to get rid of all the public benches. This is trend that’s spread all over the country.

Under Obama, public housing was eroded in every major city. And people with disabilities (PWD) depend on public housing. So how are PWD supposed to get out of institutions if there’s no place for them to go?

Under Housing Secretary Ben Carson, increasing amounts of public housing are coming under non-profit and private companies’ control. So PWD and others who used to live in those communities can’t move back.

One time, Leroy was stuck on the third floor of his building for an entire month because the elevator was out of order. The lawsuit is still pending.

Under former California Governor Jerry Brown, the conservatorship laws undermined access to SSI and independence for many PWD.

Anti-poverty and anti-disability laws are making things harder all over the country. We have people taking housing away from elders because their places are “messy.” What can we do? Poor Magazine has been on the forefront of this issue.

We need funding for public housing and related disability programs so PWD can stay where they live and live where they want to.

Right now, Poor Magazine is working on building housing in East Oakland.

There is basically no low-income housing any more. Leroy Moore feels like he’s hanging on by a thread, and he’s not alone. When the current president pushed to exterminate housing programs, the only person who came out against it was Rep. Maxine Waters.

And it’s not just housing. IDEA, funding for special education, has NEVER been fully Federally funded. People with disabilities of all ages remain under attack in the US.

Leroy Moore has been to the disability caucuses at DNC conventions—and there was no one there. NOBODY. Just a video of FDR. That tells you how much politicians value PWD.

We need to destroy conservatorship law, as it goes against Olmstead.

The one in-need housing population that is really growing is disabled elders. This is a violation of civil rights, and we need to do better.

The floor is now being opened to questions.

Q for Alice Wong on the intersection of disability/Asian people/women. Though she doesn’t have five hours to do properly address the issue, here's the short version: she consistently sees that disability leadership is… white. This has to do with who gets amplified. Which gets in the way of Asian/other POC identifying as disabled.

Disability activism needs to be more welcoming. Alice is wary of being tokenized. She wants to be valued for all of her amazing talents! There are a lot of people who share her identities out there. She wants them to be visible too.

“Fuck the model minority myth!” Alice got a D in trigonometry! The stereotypes of Asian-Americans as model citizens and students and coming from wealth is damaging, and limits Asian PWD from getting mental health and disability supports/community.

Audience member who is Autistic and Black talking about how he was running for a BART train because he was late, then got detained by the transit police because he fit the description of a perpetrator. It was really distressing.

John Marble was asked by a local newspaper about a story on autism and restaurants. And he really didn’t want to be the token white male autistic; he insisted on having an intersectional grouping of autistics.

He ways we have to change the narrative that we project and make it more inclusive. Starting with having autistic people on the boards and staff of autism orgs because most of them (MOST) really do not include autistic people at all.

Alice: EVERY issue is a disability issue, e.g., mass incarceration. And prisons are just another form of institutions/warehousing. There is so much trauma that is created and compounded in those environments.

Immigration is another huge intersectional disability issue, e.g., family separation and the trauma that it creates. Not to mention that PWD are having all of their disability supports (like crutches and other devices) removed as standard procedures. We need more solidarity.

Disability rights are civil rights are human rights.

Leroy Moore: Moses had a disability. So PWD have always been here. The problem is that people are just not doing their homework.

Also, reports of police brutally about PWD/people of color are generally not done by or informed by PWD/people of color. We need community-informed resources.

Leroy Moore: Poor Magazine has a workshop called “Never Call The Cops.” These are the kinds of resources disabled people of color need, these resources save lives. This is what the community needs, NOT more police training.

Elders are dying on the streets. PWD make up a huge proportion of homeless people. He’s been to cities in FL where people were kept in cages on the SIDEWALK. We need to think outside the box.

If you want disability justice, go to Sins Invalid.

Micaela Connery: Disability is a lens that is too often missing from formal social justice and housing policy work, even when race and SES lenses are applied. This needs to change.

Alice Wong: if allies want to think of themselves as co-conspirators, they need to support the orgs that are already doing the work, like HEARD and the Autistic Self Advocacy Network (I missed the first org noted, so sorry). Props to ASAN Director Julia Bascom, and see their Resource Library.

John Marble: Autistic and disabled people are the experts in their own lives! Imagine what could happen if even 1% of the money splashed all over autism causes and orgs was given to the autistic people who know what to do with it to change autistic lives for the better?

John recently took on Fiona Ma for spewing ableist crap all over the disability caucus at a Democratic convention.

John desperately wants radical young autistics to show him where he needs to push the political envelope! What is he missing?

Alice is giving props to #ActuallyAutistic Greta Thunberg and her lack of f***ks when it comes to doing what is right for the planet and humanity’s future.

She is also out of patience with gatekeepers who are getting in the way of disability and civil rights justice. We need better leaders.

Leroy: we need a change in the status quo! We need to support politicians like @RepMaxineWaters who actually do push back and do the right thing. Even when it hurts.

Micaela to Alice: what does good ally ship/co-conspiratorship look like?

Alice: Acknowledge what you don’t know! Find out more about what ableism is, in terms of everyday experiences and also systemically. Read up. Follow these panelists right here.

  …and provide material support. Show up to events. Buy the books and CDs. Connect with actual disabled people. Immerse yourself. Alice loves the people and the culture in the Disability movement and she thinks you will too.

Leroy: Krip Hop Nation is having a Disabled African Musicians tour in July! Support it.

Over and out! Thanks everyone.


Additional Event Coverage and Links: 

Alice Wong: The Olmstead Decision & Me
The Kelsey: Reflecting on Olmstead Panels

Tuesday, June 18, 2019

Dangerous Assumptions

proud parents
Photo © Lucy Downey | Flickr / Creative Commons
[image: Two Canada geese swimming with a fluffy baby gosling.]

Julia Bascom

There is this thing that happens sometimes.

Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.

Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.

They are so, so excited.

And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.

And it’s a big problem, because the way they talk… they think the problem was that they treated their child like they were intellectually disabled, and they weren’t. But that’s not the problem. The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.

These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support. The people who came up with these terms came up with them for a population where there is very little doubt that significant disability is a factor. These terms don’t mean assume they aren’t actually disabled. These terms mean assume they are a person, and remember what you don’t know.

When the neurodiversity movement first got its legs, oh so many years ago, we got a LOT of pushback from people who thought we were denying disability. And we had to be clear that we meant everyone. And I worry, more and more, that certain very academic circles have left that behind, in practice as much as in theory. It makes liars out of the rest of us, and it makes a lot of work very, very difficult.

If I told the parents in question that I am thinking about this, they wouldn’t understand. They’re not saying intellectual disability doesn’t exist, they would say. But the truth is, they’re either saying that, or they’re saying thank god, it wasn’t my kid.

And it’s a slap in the face, every time.


Originally published at Sincere thanks to Julia for allowing us to share it here.

Friday, June 7, 2019

How Being a Minority (of Mixed Race) on the Autistic Spectrum Shaped My Life

Emanuel Frowner

Emanuel Frowner (photo courtesy the author)
[image: A smiling mixed race man with short black
hair in a natural style, and a mustache. he is wearing a
collared orange-and-blue Knicks pullover.]
I grew up mostly in the Bronx with my dad and my grandmother, and I still live there. The neighborhood was dangerous during my childhood because of fighting and drugs—a few people were killed. Therefore, I could not go out alone (until I was 17) and my folks were very protective of me. I would see my mom on the weekends. Sometimes, I would hang out with my siblings (with my folks). They had a different mom than I did, but we had the same dad and grandmother. Even though my grandmother looked very white, she called herself black, but my dad did not agree with her on that. My mom called herself black as well.

I was very quiet, and I would stutter sometimes.  My grandmother told me that this was because I think faster than I talk. She also told me that a still tongue keeps a wise head. I took these as compliments.

I went to an elementary school right near where I lived. At first, I did some mischievous things like breaking forks. During a test, I bubbled in all of the choices and the kids started saying that I was all wrong. The teacher erased them. My grandmother found out about this and she was not happy. At that point, I started doing a lot better and I began getting good grades on my report card. I kept working hard and with the help of my folks, I was named student of the month. This was an honor for me and it made me feel proud.

This did not prevent me from being bullied by other students and teachers just because I was different, which led to my dad homeschooling me from the 6th grade until I got my GED in 2000.  Being homeschooled helped me excel academically. It also helped me develop a strong work ethic, and it helped me to think outside the box.

Another reason my dad homeschooled me was because he did not want me to be fed nonsense. My dad did not want me to get a diagnosis that would put me in a box, or have a label so others could categorize me. He also did not want my brilliance and sensitivity to be overlooked, or want me to be marginalized to the point where it would do irreparable damage. This was a culturally specific issue (which is described later in this essay) as well as a generational issue; my folks stressed that getting an education was the most important thing. And my dad also did not want me to be apart of the herd mentality; he wanted me to develop along my own lines. He took me to his job to meet his coworkers and we all would hang out sometimes. It was okay for a while, but I would have liked to been around others who were similar to me.

Technology really came into my life when I was in my late teens. I began emailing and texting, and no longer had to rely on talking when communicating with others: I could take my time, and respond at my own pace. This also helped me have more privacy, and over time I began making my own decisions.

Before I knew I was autistic, quite a few people told me that I was very bright person who was just quiet and shy—even though I had particular interests like dates, sports stats, being punctual and being patient, yet did not have a few social nuances that others had. This may be because, being mixed race and from a minority culture (I am part Caucasian, part African American, some Native American, some German and a little Scottish, just to name a few), I found that talking about psychological subjects like autism is overlooked and is often talked about in a bad way. Also, I hardly received the type of support or empathy I needed when I was struggling. For example, when I stuttered a bit, I was told that I was hesitating. Another example is when I chose Psychology as my major in the summer 2004, one of my relatives was not supportive of this. But it made me even more determined to do well and I got my BA in Psychology from St. John’s.

In 2005, I started hanging out with my oldest brother Blair, who lived in Canada. He knew an autistic lady, started reading about ASD, and began telling me that I might be autistic. He did some research online and found the Seaver Autism Center at Mt Sinai for me. I did interviews and tests there, and the doctor told me that I was on the autistic spectrum. I was a little surprised, but it was a blessing in disguise.

I began reading up on autism. Two years later When I told my dad what the doctor said about me, he was surprised, but then he came to accept it. I joined some support groups over the years and made a few friends. In 2009, a lady, Katrina R. from Job Path, helped me obtain two jobs through customized employment. I have had those jobs for eight and a half years.

Today, I still work, and also do some speaking gigs. I am also a die-hard Knicks fan, and have been for years. In the future, I would like to do even more public speaking and I would like to run workshops relating to autism. I would like to write a book about my life story and I would like to write more articles on topics relating to autism. I would like to one day run an autistic group designed for minorities. I would definitely like to do more acting in order to improve my skills.