#IAmAPreExistingCondition

Rooted in Rights is putting together a video project, #IAmAPreExistingCondition, as a campaign to ensure the Affordable Care Act remains law.

You can submit your YouTube video through this form until May 10, 2017. You should think about whether you want all this information out there before doing it, though.

Click here for my video with CC – there is also a transcript. Closed captions should begin automatically when you click play – if they don’t, click the CC button.

Transcript of my video:

My name is Kit Mead, I’m from Takoma Park, Maryland.

Um, I’m autistic, I have multiple mental health disabilities, I am getting tested for and will probably get a diagnosis of Ehlers-Danlos Syndrome, which is a genetic connective tissue disorder. I also have ADHD and a couple of other things.

Without health care coverage for pre-existing conditions, I wouldn’t be able to, like – my psych meds would probably go way up, and they’re pretty expensive, and once I have the diagnosis of Ehlers-Danlos, I plan to start working on stuff for that like physical therapy and anything else my doctors recommend. And of course, living with a chronic illness just means a lot – a lot more expenses generally, and I wouldn’t be able to get coverage for like, any of it.

Because of this, I would tell my legislators that – vote no on the American Health Care Act. A bill – legislation that takes away healthcare for 24 million people is not health care coverage. It’s not protecting the people who need it most. And therefore if you vote for this bill, you are choosing to, you know, basically let millions of people die, so, vote no.

I am a pre-existing condition.

 

Against eugenics, and for a future that includes autistic and disabled people

Blogging Against Disablism Day 2017

In 1993, autistic advocate Jim Sinclair wrote “Don’t Mourn For Us.” It read “This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be… Don’t mourn for us. We are alive. We are real.” It appeared in the Autism Network International newsletter as an outline of a conference presentation they had given to parents of autistic children.

There are still many people and organizations who believe that autistics should be mourned for in life, rather than death; that there needs to be a way to find the ‘normal’ child who has been lost to autism, or prevent more autistic people from existing – cure culture. Cure culture creates dangerous dynamics, in which there is a strong focus on “fixing” autistic people, along with “battling” and “eradicating” autism. This culture also creates fear of autistic people and traits. One of the sources for the common cure culture we still see today lies in eugenics, a movement that gained popularity in the early 20th century.

It has been twenty-four years since “Don’t Mourn for Us.” We have made much progress. These include advances in representation, such as Julia the autistic Muppet and the company Apple putting out autism acceptance ads. Disability rights appeared on the political stage in a major way in 2016. The Autistic Self Advocacy Network, founded in 2006, has already become a significant player in national public policy. There have been pieces of legislation – like the 2010 Affordable Care Act – that benefit many autistic people, along with court rulings favoring disability rights and inclusive education. The Centers for Medicare and Medicaid Services issued an HCBS settings rule in 2014  that aims to give people with disabilities support in real community settings. Lindt Chocolate stopped donating money from their chocolate bunnies to Autism Speaks. And there are more victories, large and small, I could name.

But some of the largest autism charities in the nation, such as Autism Speaks, are still ones that reject advocacy by autistics, and some people still believe in discredited theories of causation and quack cures. But more disturbing is the eugenics ideology being seen in US politics, and around the public conversation on disability – an example being immigration restriction. The ideas behind eugenics say that behind the moral failings of people – and of society – there is a hereditary cause. Some people, supporters of eugenics argue, are “born to be a burden on the rest.” Conversely, supporters of eugenics also believe there are genetically and morally superior individuals.

As Sarah Jones writes for New Republic: “But eugenics, though discredited, has never been abandoned. In fact, the most powerful people in America appear to enthusiastically embrace the idea that humans can be divided into inherently superior and inferior specimens and treated accordingly… Of course, none of the people in Trump’s inner circle would describe themselves as eugenicists. They would call themselves capitalists, patriots, and Christians.” Examples include Trump’s statements on genetic superiority, Steve Bannon’s desire to “limit the vote to property owners,” and Jeff Sessions’ support for the 1924 Johnson-Reed Act – an immigration restriction law heavily influenced by eugenicists.

And Jones is right. Eugenics ideology is rampant, but I have not yet seen any political figures actually proclaiming themselves a eugenicist. Eugenics has a bad, discredited name to it now, and it’s more persuasive to masquerade under the guise of “Make America Great Again” then outright call oneself a eugenicist. It’s more convincing to cloak eugenicist views in words and actions that make people feel proud, to appeal to people using discriminatory views without ever saying one is endorsing eugenics.

As ASAN’s executive director Julia Bascom wrote for Slate about the Trump administration, disability, and the autistic community,

He sees my community as damaged goods. Recent reports indicate that, in addition to meeting privately with anti-vaccination groups, the Trump administration may convene a task force to relitigate the clear and settled science on this issue, potentially headed by noted anti-vaxxer Robert Kennedy Jr. Like so many of his policies, this isn’t just an issue of a lack of respect for people with disabilities—we cannot forget that this dishonest and unscientific nonsense has a body count.

This administration espouses eugenicist views. This administration buys into dangerous causation theories. This administration sees us as a public burden. Eugenicist views run through so much of the history of cure culture and causation.

Eugenics is a threat to the autistic and disability communities, and it is a threat to so many others.  This threat is palpable as the White House and Congress try to strip 24 million Americans, many of whom are disabled, of life-saving health insurance. It is clear in a leaked draft of an executive order targeting disabled immigrants and their families. We don’t know if Jeff Sessions’ Department of Justice will enforce the 1999 Olmstead ruling, which helps keep states moving toward community integration – along with the Medicare and Medicaid funding that is at risk. It is evident when the White House lights it up blue for Autism Speaks’ brand of awareness rooted in harmful rhetoric and support for causation research.

But, as ASAN’s statement on the White House lighting it up blue reads, “ASAN will not let our community be forced back to the too-recent time when the public consensus was that autistic people should not exist.” I’m with them. The autistic community, and the disability community, must fight as we are able to against eugenicist and discriminatory policies and attempted actions. We cannot go back to being seen as nothing but a collection of causation theories, damaged and broken and in need of “fixing.” And we must fight against any policies that promote prevention research, policies that tell us we should not be part of humanity’s future. Because we are part of the future.

After Bell sterilized Carrie Buck, he was told “a hundred years from now… your descendants may well be proud.”

And other reasons Adam Cohen is wrong about eugenics and gene editing

On February 14, 2017, the National Academy of Sciences (NAS) and National Academy of Medicine (NAM) released a report entitled “Human Genome Editing: Science, Ethics, and Governance.” The report proclaimed that, with caution, limited clinical tests of genome editing should go forward. But human genome editing is controversial. Many international reports and laws support bans or limitations on genome editing.

The report departs from these internationally accepted ethics and laws, wrote the Center for Genetics and Society. (CGS). CGS is a science and bioethics group advocating “responsible uses and effective social governance” of human genetics. CGS put out official comments and a blog post on the report.  CGS also mentions the possibility of eugenics.

On March 17, 2017, Adam Cohen – author of Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck – began an op-ed in the Los Angeles Times with the words:

We entered a new phase as a species when Chinese scientists altered a human embryo to remove a potentially fatal blood disorder — not only from the baby, but all of its descendants…Last month, the scientific establishment weighed in. A National Academy of Sciences and National Academy of Medicine joint committee endorsed embryo editing aimed at genes that cause serious diseases when there is “no reasonable alternative.” …But the committee was also right to support limited embryo editing. This time around, eugenics could be a force for good.

He concludes the op-ed with:

Again, that need not be a bad thing. Twentieth century eugenics has rightly been called a “war on the weak” — its goal was to stop people with conditions like Huntington’s disease from reproducing. Twenty-first century eugenics can enable people with the Huntington’s gene to have children without it. The new eugenics can be a war for the weak.

Cohen’s op-ed, as disability rights journalist David Perry notes, “seems to miss the lessons of the history he synthesizes in his book… Any eugenic gene editing process that is constructed in our culture will reflect the ableist reality in which they are created.”

Further, Cohen misses several other points.

Eugenics was not just state-sanctioned sterilization. Eugenics was not just about preventing “the unfit” from having children. It was, and is, also about immigration, “racial purity,” and eliminating the “mentally defective” population through any means – whether by institutionalizing people judged as such, sterilizing them, preventing their marriage, or in the case of the Nazis, also murdering them.  Eugenicists were not worried about the people with any kinds of hereditary conditions, real or perceived, and far more keen on eliminating the “threat” to the sanctity of American society and economics.

Cohen asks the question if eugenics can be used for good. A colleague told Dr. John H. Bell after Bell sterilized Carrie Buck, “a hundred years from now you will still have a place in this history of which your descendants may well be proud.” Eugenicists believed they had the superior knowledge to know what was best for society, doing public good, based on pseudoscience and their own intensely biased beliefs. They believed future generations would be proud of their work – future generations that contained no “mental defectives,” generations that had been altered by them.

Cohen said “yes” in answer to his question, that the new eugenics can be for people with genetic conditions – that eugenics can be used for good. But he acknowledges that future generations would be permanently altered.

There is no such thing as good eugenics, and Cohen misses that point by a wide mark.

A history of progressive ableism that remains today

For clarity: I know that other progressive activists do great work. This is an anti-ableism post. It should be interpreted in this manner rather than as anti-progressive. 

Introduction

Too often, progressives use ableism to accomplish their goals. I do not mean just using some words that many disabled people consider offensive.  I mean things like advocating for ableist gun reform laws. I also mean things like attributing people’s worst traits to mental health disabilities, like people do with Trump.

In the 20th century, progressives gained momentum. Progressives of this time were not the same as they are today, but the ableism is still around.  Then, the cause to rally around was eugenics. I am providing eugenics as a historical example of progressive ableism – and will point out how it still lurks in undertows of thought.

Historical example: The early 20th century and Progressive Era eugenics

Eugenics was a movement that gained some level of popularity in the early 20th century (and still continues in modern forms today). Supporters of eugenics wanted to prevent the procreation of the “unfit” and promote “better breeding.” Eugenics was popular with progressives, including reformers and activists, of the early 20th century.

The Eugenics Record Office (ERO), intended to serve as a hub for American eugenics research, was financed at one point by the Carnegie Institution. Teddy Roosevelt once wrote a letter to eugenicist Charles Davenport of the ERO about “degenerates” that said:

Farmers who permitted their best stock not to breed, and let all the increase come from the worst stock, would be treated as fit inmates for an asylum. Yet we fail to understand that such conduct is rational compared to the conduct of a nation which permits unlimited breeding from the worst stocks, physically and morally… Someday we will realize that the prime duty… of the good citizen of the right type, is to leave his or her blood behind him in the world; and that we have no business to permit the perpetuation of citizens of the wrong type.

A reformer included Victoria Woodhull, a suffragist known for being the first woman to run for president (in 1872). Another was inventor Alexander Graham Bell. Several groups of feminist reformers, including the National League of Women Voters, had eugenics-based legal reform as part of their goals.

Stop making me have to defend insidious people from ableism

Bigoted actions and words from Trump are the result of bigotry. And bigotry is not a mental health disability, though people with mental health disabilities can also be bigots. We are people and vary in thoughts and opinions. But I’d really like prominent progressive activists to acknowledge this and stop making the case for Trump being crazy. That way, people with mental health disabilities won’t face as much ableism. And I won’t have to keep defending insidious people from ableism. 

I defend even people I loathe from ableism because public figure he may be, but attributing bigotry to disability hurts all people with mental health disabilities. And I do it also because when progressives pull out the “But no sane person would do that!” or “Trump is crazy!” lines, this is what they are saying:

Only crazy people can be responsible for such vile acts.

It’s the line of thinking that mental health disability must be responsible for acts society can’t explain, acts society considers terrible. The unintentional undertones of this speak of eugenics to me. Eugenicists of the past posited that many people, especially marginalized people, had increased rates of poverty and crime due to mental and moral “deficits.”

Today, mental health is blamed for everything, from mass shootings to having a poor moral compass – and Donald Trump’s actions and bigotry. Right-wingers and the GOP are the party of eugenics themselves, for sure, and I find that loathsome. But progressives should stop blaming mental health as they oppose damaging policies and actions.  

Related Posts:

Teach Autistic Youth They Have a Community (Part One)

Other Autistics have written on the importance of disclosing an autism diagnosis to children. I fully agree. I also think knowing a diagnosis is a powerful tool in many ways, but it is not the only obligation of parents. I knew immediately about my ADHD diagnosis at age 7 or 8, then later my autism diagnosis at 14. I didn’t know I was disabled until college.

Many adults in my life told me I had ADHD. They just said it made me hyper, and gave me attention issues… then kept saying the same positive things about me: Smart. Unique. Creative. Reads a lot. When I got my autism diagnosis, they started saying: Smart. Reads a lot. Very high-functioning. Uniquely aware [of the diagnosis]. When they spoke of things I struggled with – like attention issues, staying organized, being polite, and making the right words happen – it was not to acknowledge disability, only deficit. It was not to work with me or discuss ways other people could adapt. I needed to adapt to the world, except for some accommodations.

They tried to quantify my life into skills and deficits. They told me I was more aware than others – like those in the special education classrooms – despite those kids being the most accepting of me when I hung out in their classrooms. I learned my deficits outweighed other qualities. I learned that there was no one else at all like me. I learned that I was alone. Not knowing what the diagnosis meant affected the ability to find friends, worsened depressive episodes and anxiety, and increased social isolation.

In my younger years, I had been able to get by through extensive book reading, writing fiction, and other solo activities. As I aged, my differences became more apparent. I wondered why I couldn’t be like everyone else or have friends. I had about one close friend in my high school years – an online one who meant a great deal to me. We couldn’t meet up in person, which I wanted desperately.  I wouldn’t know anything else but isolation until college – and making two autistic friends, along with a couple of others who accepted me.

The diagnosis given to me answered the question why for why I worked the way I did. No one helped me understand how it made my brain and body work. No one explained that it is a disability with ups and downs and effects from society. No one aided me in accessing community and culture. The diagnosis did not simply hand me all the tools I needed for life, in of itself. Community, once I found it, did.

Much of the autistic community may exist online, but it is vital. It will give youth access to writings by other autistic people. It gives them access to people who have written or know about coping tools, self-advocacy, and policy issues. It gives autistic youth an autistic culture. Parents (and other adults interacting with autistic youth), please explain autism to autistic youth. Please tell them more than a diagnosis. Please help them find other autistic people. If you don’t know the answers to their questions about autism, ask autistic people. It will change their world at least as much as telling them the diagnosis.



Part Two (Upcoming): Tips and Ways to Teach about Community

Rewriting the Narrative on Psych Ward Abuse in Journalism

Psych Ward Reviews gained a new feature in January 2017: a news article repository of staff-on-patient abuse in hospital psychiatric wards. It is an ongoing effort, both of searches and a morbid set of daily Google Alerts with phrases such as “psychiatric patient abuse.” As part of my search process, I have read over about two hundred articles so far.

One thing of note was that many of the articles on staff-on-patient abuse I found were not in major publications. They were in local news outlets or smaller magazines. And as I knew, there are many failures of psychiatric wards as a crisis care model. These failures can involve staff-on-patient abuse, suicides, ill-maintained facilities, and Medicaid fraud. My focus here is how journalists cover abuse and other failures.

Journalists do so with a few different lines of thought. Many fail to address issues that come with psychiatric wards as the main method of crisis care. These problems include taking away patients’ rights and ability to make decisions. Instead, they discuss issues such as funding and staffing shortages, and overcrowding and bed shortages. However, the reasons for psych ward abuse are power dynamics and ableism.

The system requires institutionalization in secured wards away from the public. Patients then lose their rights (available in theory). The power shifts to doctors and staff, who make decisions about a patient. Many hospitals seek patients for profit. These are settings prone to abuse. We must build a stronger network of community-based crisis care, including peer respite centers and support. There must be meaningful oversight and accountability for any community care providers.

But why don’t journalists talk about creating alternatives to psych wards? The reasoning by many journalists is that shortages result in increased abuse and neglect of patients by staff. They then describe hospital failures as inevitable because of these shortages. But the psych ward system’s issues are structural, rather than wholly solvable with money. Journalists could instead talk about these structural failures. They could do so in many ways.

They could cite the various works around abuse in institutional settings, and question power imbalances. They could push for more accountability and data on abuse rates in articles. They could interview former patients, to see what community options they want. Depending on the size of their platform, they could craft a new crisis care narrative for the broader public. The narrative would present alternatives entrenched in community-based, rights-affirming crisis care.

 

an exploration of autistic mad pride: part one

Introduction:

exploring the possibilities of neurodiversity, mental health, and autistic mad pride intersections

Recently, I found an article on Medium talking about schizophrenia fitting into neurodiversity, which got me thinking about how mental health more broadly fits into neurodiversity.

There are a lot of people I know with mental health disabilities/[a person’s preferred terminology] who dislike the idea of categorizing mental health things as neurodivergence, who feel that claiming mental health stuff as neurodivergence by definition means claiming it as an intrinsic part of the self that can’t be separated from oneself- and thus can’t be recovered from.

Currently I’ve been trying to think about and sort out the various models of mental health. For instance, the recovery model as it was conceptualized and formed after the period of large-scale, long-term institutionalization talked in part about recovering from the effects of society.

Then a lot of what “recovery” means, as I’ve seen it discussed, not just recovering from society’s effects, but primarily recovering from the effects of the mental health disability. I do know people with mental health disabilities who support this idea of recovery insofar that it means that they experience a significant reduction of symptoms along with developing coping strategies for symptoms.

However, as a disclaimer, I am not in fact trying to tell people that they cannot want to recover – experience a significant reduction in symptoms etc. – from their mental health disabilities.

But I think the recovery narrative, if pushed onto us by others, is, if not harmful, not exactly beneficial, because then it is not a choice. And a lot of times that’s the only narrative people are given.

And then a lot of autistics have co-occurring mental health disabilities, as I’ve discussed in this AACC presentation (PDF) and in this blog post series (the transcript for the AACC presentation is here as a PDF). And the autistic rights movement is rooted in neurodiversity and neurodivergence as identity. 

Then the questions I have are, that I will address in blog posts to come:

  • Part Two: Should mental health disabilities be fit under the category of neurodivergence as identity? (I can’t answer this for everyone, but I can answer it for myself and the way I see it).  
  • Part Three: Why haven’t the mad pride, mental health rights, and autistic rights movements intersected nearly as much (to my knowledge)?

 

We need to name some modern practices as eugenics – and don’t

How this failure to name eugenics – and then condemn it as such – has resulted in a growing acceptance of renewed efforts to “better humankind”

An article on Germany’s renewed efforts to document Nazi-era medical experimentation and murders of disabled people came out recently without ever mentioning the word eugenics. Published on January 5, 2017, the American Association for the Advancement of Science’s Science Mag titled the piece “Germany to probe Nazi-era medical science.” The phrase “medical science” is too kind for murders rooted in a eugenics movement – and eugenics is not “medical science.”

I am pleased that Germany is doing a probe and that this is getting coverage in a science magazine with such detail, as eugenicists claimed scientific and medical evidence as their rationale. I am less so that they didn’t name eugenics. The article’s word choice got me thinking about eugenics in the past and modern eugenics. If you don’t name eugenics as such, it’s that much harder to recognize today.

Many people I know agree eugenics was a movement that happened in history, and name it in articles and other writing. But I have not seen as many people discussing eugenics practices happening in recent years and today. As a society – with some exceptions – we don’t call many actions eugenics or discuss the perils of eugenics practices occurring in them.

  • We don’t call it eugenics when prenatal testing in order to avoid having disabled children – particularly those with Down Syndrome – happens.
  • We don’t call it eugenics when disabled people receive the recommendation that they should not have a child because they have a disability.
  • We fail to discuss eugenics beliefs behind the removal of children from disabled parents on the basis that they are “unfit to parent” due to disability.
  • We don’t call it eugenics when many states still have sterilization laws on the books and when Buck v. Bell has never been overturned in its entirety.
  • We don’t call it eugenics when disabled people are still sterilized “for their own protection” in many countries, such as Australia. 
  • We don’t call it eugenics when discussions of “designer babies” that are “perfect” – meaning, to many, without any form of disability – occur.
  • We fail to discuss eugenics when talking about human genomics and gene-editing programs, such as CRISPR.

Yet these are rooted in eugenics, with the belief that disability is unacceptable and bad.

Joan Hume, a woman with a disability, wrote in 1995 about the “new eugenics,” prenatal testing, and having disabled children, “The message about disability is loud and clear: the prospect of having a disabled child is not acceptable for many prospective parents…. With the emphasis on “perfect babies” the message of the new technologies is that disabilities can and must be weeded out by eliminating foetuses with certain defective traits. This is clearly a modern version of the earlier eugenics perception that disability is inherently bad.”

And eugenics is, indeed, inextricably linked with the concept that disability is bad – regardless of whether the practices target non-disabled people or not. Eugenics tells people that disability and failure to conform to mainstream society’s expectations and rules are bad. Eugenics is ultimately rooted in  intertwining sets of bigotry: racism, sexism, classism, ableism, and more forms of oppression, using disability, “abnormality,” and “defects” to explain practices such as involuntary sterilization of any marginalized person.

The popular American eugenics movement of the Progressive Era past had eugenicists positing that intelligence and moral “defects” in the “feebleminded” people were passed down like Mendel’s peas generation by generation, using the growing field of genetics, the myth of the “feebleminded menace,”  and “fitter families” contests to make it plausible and acceptable to society. They twisted scientific concepts and used new scientific discoveries and theories of science to make it sound exciting to Progressive-era society – and they also capitalized on public fear and worry about poverty, race, immigration, and disability.

In many ways, it had legitimacy among many – eugenicists testified before Congress on immigration restrictions as “experts” in the years before and during World War II, many states had sterilization laws, and the Supreme Court affirmed a Virginia eugenics sterilization law 8-1 in 1927. In several ways, it did not. Some eugenicists’ careers in eugenics ended early due to the growing negative response from the public. Some prominent scientists decried eugenics as pseudoscience. And eugenicists in that era failed to see their ideas of sterilizing every “feebleminded” person fully implemented on a massive, national scale. 

Unlike the eugenics of the past, eugenics today – from what I’ve seen – is generally cloaked in scientific legitimacy, using real science like CRISPR and gene editing and genomics. Like the eugenics of the past, a lot of people still have fear and other negative, oppressive beliefs regarding poverty, race, immigration, disability, and more. Like the eugenics of the past, is is presented as exciting new scientific discoveries.  And that makes it just as terrifying, if not more.

(ETA: a good resource to follow is Genetics and Society, “a nonprofit information and public affairs organization working to encourage responsible uses and effective societal governance of human genetic and reproductive technologies and other emerging technologies.”)

2016 was lighting candles to mourn, but it was also carrying torches high

Year in Review: 2016

 Disability Rights, State of the Blogger, and Looking Ahead to 2017


  • Progress in 2016
    • #CripTheVote and disability on stage in U.S. politics
    • Disability Intersectionality Summit
    • Other moments in disability rights
  • State of the Blogger
    • Overview of the blogger’s 2016
    • Looking at, and valuing, disability and autistic history
    • Top five viewed posts and pages
    • Posts and pages that I liked but had fewer views
  • Looking Ahead
    • 2016 as an atypical year and the blogger’s plans for 2017
  • Conclusion

Progress 

#CripTheVote and disability on stage in U.S. politics

cripthevote-2

The logo of #CripTheVote, designed by Mike Mort. Blue text reads: #CripTheVote. There is graphic-design image of a voting ballot box with a ballot being dropped in. The ballot box has four blue squares, with line art in white of the standard wheelchair user disability icon, a brain, a pair of hands signing, and a person walking with a cane.

 

In 2016, Alice Wong (Disability Visibility Project, which chronicles disability stories), Andrew Pulrang (Disability Thinking blog and Center for Disability Rights), and Gregg Beratan started #CripTheVote, which is

a nonpartisan campaign to engage both voters and politicians in a productive discussion about disability issues in the United States, with the hope that Disability takes on greater prominence within the American political landscape. We hope to encourage people with disabilities to engage with the election at all levels from President on down, and to vote. We also want to hear candidates engage with disability policy issues and disabled people as much as possible.

They hosted Twitter chats, provided resources to disabled voters, and sparked a more organized engagement with politics from the disability community. It brought disability to the stage of politics in a major way, and enabled disabled people to have a central platform to organize around and put their resources and news.

Hillary Clinton released an autism plan and announced support of the Disability Integration Act after an autistic person stood up and asked if she supported it, leading to then-candidate Bernie Sanders co-sponsoring the bill. Then at the Democratic National Convention, a disabled person – disability rights activist Anastasia Somoza – took the stage. 2016 was the year, as Dylan Matthews writes, that disability rights broke through in national politics and disabled people became seen as a constituency by politicians.

Disability Intersectionality Summit

This year, the Disability Policy Consortium accepted proposals and held a Disability Intersectionality Summit. Presentations included topics on the intersections of being undocumented, being LGBTQ+, being a person of color, having mental health disabilities, on #DisabilityTooWhite – the hashtag and movement around the the disability community’s failure to represent racially diverse voices – and more. It was held in Boston on November 5.

Other moments in disability rights include: 

Disability rights groups struck a major blow to sheltered workshops.  Maryland voted to end subminimum wage. An investigation has finally opened into Illinois’ group homes for disabled people. A major Minnesota job provider for disabled people agreed to reform its hiring practices. Michigan banned non-emergency restraint and seclusion for disabled students. Georgia’s governor spoke in favor of Employment First policies for disabled people in Georgia.

The FDA finally put out a proposed rule for banning contingent electric shock devices like those used at the Judge Rotenberg Center. A major case involving a girl and her service dog went before the Supreme Court, and could open up an easier path for disabled students and their families to make schools comply with various laws. Litigation against Georgia’s substandard, segregated “education” system called GNETS for students with disabilities by the Department of Justice moved forward.


State of the Blogger

Overview of the blogger’s 2016

It was a hard year, like it was for many. I spent a serious amount of time dealing with badbrains. I wrote about the dehumanization of psychiatric wards here. I adopted a cat, though, so that makes up for a lot of things.

In terms of other advocacy, I continued volunteering for a non-profit’s social media that I have done since 2015. I also kept working for a non-profit that I been with since December and continued to blog. I began work on a great number of blogging projects like Autistic Community on Medium, and Welcome to the Autistic Community on Tumblr. I also ran Autistic History Month this year.

I also decided to turn my life experiences and history research into writings for publications and have published with the Establishment and the Deaf Poets Society on institutionalization and psychiatric wards, eugenics history and Buck v. Bell, and my experience with housing in college.

Looking at, and valuing, disabled and autistic history

In addition I have been working on my disability history/eugenics history blog more. I revamped my eugenics history 101 post into a downloadable PDF. and updated the resources list for that blog. I worry a lot about eugenics as a popular movement being back full force – it’s still here, in some areas and ways.

I also ran the Autistic History Month blog this year; a link compilation for autistic history can be found here and the posts for 2016 here. As Sarah Pripas-Kapit and I remarked in the closing post for Autistic History Month, history is essential to working for change today:

Thank you for furthering the knowledge of autistic history, and showing that we have a history. I am the first to admit that I don’t know everything about autistic history… Knowing history is vital, especially in this time of turmoil for many. Knowing autistic, and other disability history, is vital. If we don’t know how we organized and formed communities in the past, it’ll be harder to organize and sustain community now. -Kit Mead

It can be tempting to believe that history is an upwards trajectory, with things always getting better and better. Historians call this the “Whiggish view of history.”

Yet the Whiggish view of history oftentimes is not supported by evidence… While the past ten years has been a period of progress for the autistic community, I fear that we may be heading into a period of regression. As so many others have said, the election of Donald Trump to the presidency is looking to be disastrous for people with disabilities. Like many of you, I am concerned about the months and years to come.

History tells us that civil rights are never a done deal. We have to work continually to uphold them.

But I hope that history can also provide hope. We are not the first generation of disabled people to face an ableist state and rollbacks of progress. By looking to the past, we can find a way forward during these turbulent times. -Sarah Pripas-Kapit

Top five viewed posts and pages

Posts and pages that I liked but had fewer views


Looking Ahead

2016 as an atypical year and the blogger’s plans for 2017 

Like s.e. smith says, 2016 was not normal and therefore, we should not allow ourselves to long for 2016 and make it a crowning glory of years that we look back to sometime in the middle of 2017 and go “well, things were so much better then!”

I really recommend reading the post by s.e. smith for how we cannot normalize 2016 because it wasn’t normal. We lost a lot in 2016 and our state of politics has steadily descended into even more chaos than usual. It’s not like I particularly look forward to the next several years’ potential events, but I will take a lot of pride in being alongside many other great activists, working to keep what progress we have made.

In 2017, I will continue to update my post-election resources page and continue my advocacy work, sharing and disseminating resources. I will continue to blog about the things that mattered before this election, and will blog on the things that matter more now because of the election.


Conclusion

2016 may have been holding candles up against a darkening sky in mourning, but it was also keeping candles lit and torches high against rain and darkness. We made a lot of progress in many different areas, and we also lost a lot – but we have faced dark times before, though never like this. We will work against the rapidly encroaching darkness of night to be lighthouses in the fog and darkness for many ships. Torches held high, we face 2017 and the years to come.

Carrie Fisher (Princess Leia) Wrote Books and Had a Service Dog

carrie-fisher

[Image description: Three images related to Carrie Fisher. From left to right, Carrie Fisher wearing glasses and kneeling next to her service dog, the French Bulldog Gary, at a red carpet event; Carrie Fisher dressed in white as Princess Leia with her iconic hair buns, surrounded by Stormtroopers; and Carrie Fisher’s book Wishful Drinking, which has her name, the title, and an image of Carrie Fisher with hair buns facedown on a table with a martini glass in her hand.]

In high school, it was mentioned to me in passing by someone that Carrie Fisher, whom I knew as Princess Leia, had bipolar disorder.

I shrugged, and said, “Oh, okay.” She was still Princess Leia.

Sure, depressive episodes and generalized anxiety made up a majority of my days, a damp humid cloak like the Georgia summers I liked to wander down the streets in – alone. An autistic, depressed, anxious wreck, isolated and considered socially unacceptable. But Carrie Fisher was just Princess Leia, right?

I never thought she meant much to me besides her role in Star Wars until a short while ago. In college, I became invested in disability rights and later, after my first and second hospitalizations in a psych ward, mental health rights as well. Each discharge from the hospital read that I had major depressive disorder, not bipolar disorder. Each hospital had only seen me for suicidality. They didn’t see the times I felt higher than the hills I once wanted to die on, and faster than the too-fast DC Metro trains. I find the Metro a relatable metaphor. I too sometimes go too fast, experience frequent malfunctions, and occasionally derail.

But I find her more than a relatable metaphor. Carrie Fisher was a bipolar person who dealt with substance abuse issues. She was often considered socially unacceptable. She openly spoke about her mental health disability, and substance abuse issues (which were in part an attempt to keep her manic episodes in check). She was open about her dog Gary’s role as a service animal and took him to public events. And she was also the actress who played Princess Leia, a mother, an author, and a script doctor who edited scripts.

She was Princess Leia, and she was also an outspoken mental health advocate.

I owe her a lot.

For talking about about everything in the open. For being Princess Leia but also someone who employed a great number of coping strategies for her mental health, and talked about them. For sometimes being considered socially unacceptable.

For showing me that she, Carrie Fisher – Princess Leia – was as outspoken in real life as she was on screen. For showing me that it’s possible to be vocal about personal struggles and what you don’t like – and what is good – about your brain and yourself.