What We’ve Lost, or, What We Know (Autistic Pride Day 2020)

I. The Immutable Fire of Grief

We have always grown out of what others tried to define us as. We started writing our own stories more prominently in the 1990s. We always wanted our own narratives. A lot of that is lost: old listservs and expired blog domain names, and who got left out in the prominent record of our “short” history, and who was included. Sometimes we try to recollect it.

Other things we lost: stories, people, community members. Some recently, some to obscurity, some over a decade ago, many to direct and indirect violence. And so those of us who live have always been the immutable fire of grief, leaping in flames. But before the renewal of the forest fireweed, there’s us, floating down through the air as smoked out ash.

Whether it is the police targeting a Black autistic person or the school to prison pipeline, trans autistic people being denied gender affirming care, being abused at home or a victim of filicide, subjected to compliance-training behavior therapies like ABA, workplace discrimination, or a combination… Or maybe it’s something else, and – and – and…

II. Ash and Candles in the Dark

There is pain and beauty and darkness. I’ve said it before, and I’ll say it again:

I see beauty and pain and candles lit against the darkness as we mourn and try in vain to collect our emotions. I see the darkness pressing against the community… [but] I watch a community in pain sometimes come together in the most poignant of ways.

Ash slips through cracks and fingers so easily. Many of the people we’ve lost we’ll never know. In the cases of the people we did know, sometimes it still wasn’t enough. Though I burned myself out at least two years ago and haven’t really been as present since, I am not suggesting we give up. Rather, acknowledging the trauma weaves a stronger community.

Pride and acceptance aren’t the only pillars of the autistic and neurodiversity community – or any community. There’s the history and what came before, to remember, honor where proper, and learn from. There’s the coping and community support. There’s the fighting with steep odds and the resting, and the myriad contributions to a community’s culture.

There’s also being alive, woven into the community tapestry by sheer existence. Because what is a community without its people?

Letters sent re: #StopTheShock #WeAreStillWaiting

Today (4/24/19), is the day of action about the GED shock device used on disabled ‘students’ at the Judge Rotenberg Center in MA. Learn more here.

CW torture, electric skin shock

 

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To the FDA

CDRH-Center for Devices and Radiological Health
Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, MD 20993

1 (800) 638-2041

DICE@fda.hhs.gov

To whom it may concern at the FDA,

My name is Kit Mead, and I am from Baltimore, MD. I wanted to ask about the proposed ban of the GED device used at the Judge Rotenberg Center in Canton, MA, which uses electric skin shock as an aversive on its disabled ‘students’.

The FDA originally concluded a ban should take place in 2014. Since then, ‘students’ continue to be shocked. I urge the FDA to ban the GED shock devices used at the Judge Rotenberg Center.

As a disabled disability advocate, I was relieved to hear in December that the FDA plans to finalize the ban. But people with disabilities are still being tortured at the Judge Rotenberg Center, and time is of the essence – not one more person should get hurt. When will we see the regulation finalized?

Thank you for taking the time to read and respond to my email. We are still waiting for the ban to be enacted and hope to see it finalized immediately.

Sincerely,

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To Congresspeople

[Insert greeting here]

I wanted to write to let you know about a legal form of torture for autistic and other disabled people in the US, the Judge Rotenberg Center in Massachusetts. It uses a GED electric skin shock device on its ‘students,’ who live in reality in an institution.

In 2014, the FDA held hearings on whether to ban the use of the GED/electric skin shock as an aversive. They concluded such devices should be banned. In 2018, the the FDA finally released a Unified Agenda stating they were working to finalize the rule that would ban the GED used at the Judge Rotenberg Center.

The FDA has continually said that they are working on finalizing the rule, but we need Congress to hold them accountable. You can find more information and a sample letter to the FDA at autisticadvocacy.org/fdaletter. Thank you for taking the time to read and respond to my email. I depend on you to stand up for people with disabilities – can I count on you to write to the FDA?

Sincerely,

---

 

I sent my letters to Congresspeople using Resistbot. (Resistbot also has an ‘editor’ function where you can submit a letter to the editor of your local paper, which I did).  I used my own words and some phrasing from ASAN templates. Learn more about the issue and what you can do here.

bendy joints, fragile life, and how the denial of effective care can kill us

Disabled people often rely on an intricate but fragile network of supports, services, and medical care to survive. Sometimes the fabric of supports and lifesaving medical care bends like my joints, stretching far like the faulty collagen in my body. Sometimes it does not bend, but tears, severing the thread of life.

Carrie Ann Lucas, disabled attorney, parent, and pioneering activist, was 47 years old. She had a rare form of muscular dystrophy, but she died of complications from a treatable condition because UnitedHealthCare refused to authorize a medication that she needed. I never knew her, but I knew of and valued her work.

And it is not just Carrie Ann Lucas.  I am too tired to find all the names, all the capricious insurance denials, all the bias in medical professions. It is all kinds of people, disabled people of all stripes. I wish I knew more of their names and stories. If this was Leverage, there would be people tackling the holes Robin Hood style, case by case. This is not Leverage. We have direct action and policy still. We should use it:

There is an institutional bias in our system of supports and services. Sometimes that kills people. There is a long waitlist for SSDI appeals. The death toll is mounting. People get taken off their benefits without warning. Sometimes that kills people. Insurance companies often won’t pay for the most effective treatment. Sometimes that kills people, like Carrie Ann Lucas. 

I am disabled, low-income, and on state Medicaid. I am struggling to get benefits. Republicans keep trying to kill the Affordable Care Act. I am mere peoples’ generosity from being forced to give up my cat, move in with relatives, and suffer cascading mental health crises that could end badly. I will be 26 soon. Sometimes I wonder if or when my friends and I will die early, and within what scenario.

Comments to HHS on possibly altering HIPAA mental health privacy rules

The Department of Health and Human Services (HHS)’s Office for Civil Rights (OCR) put out a “Request for Information” on possibly changing HIPAA privacy rules for people with “serious mental illness” and substance use disorders. The docket can be found here. The comment period is now closed.

The changes they are thinking about – this is not a proposed rule yet, but concerning – are encouraging doctors, to share more health information in “emergencies” and expanding caregiver/other involvement in people’s treatment.

I think this is bad for many reasons, which I hope to have indicated in my comments, though I broke them down a bit to be more convincing. I addressed “b. Promoting Parental and Caregiver Involvement and Addressing the Opioid Crisis and Serious Mental Illness.” 

.     .     .

I am an autistic, LGBTQ+ person with chronic pain and mental health disabilities (referred to as SMI in this RFI). I want to focus on section b) Promoting Parental and Caregiver Involvement and Addressing the Opioid Crisis and Serious Mental Illness.

My abuser, my father, may not have been the source of my bipolar disorder, but he was assuredly the source of my Complex Post-Traumatic Stress Disorder (C-PTSD) and generalized anxiety. The last thing I’d want would be for someone I’ve tried to shut out of my life in every way possible to be able to access my protected mental health records.

For some people, they have not yet been able to escape the source of their trauma – their abusers. These abusers would have far easier access to their victims’ protected health information (PHI) if OCR decides to move forward with this rule.

The opioid issue is a serious one, but has significant nuance to it. And substance abuse certainly co-occurs alongside mental health concerns at high rates. But the solution is not to provide greater access to PHI to family members, caregivers, and a nebulous, unspecified “others” category – which could mean anyone a mental health professional deems appropriate.

So my response is a resounding “no.” There are already HIPAA exceptions in place. We may be still reliant on abusers for food or money, and potentially granting them access to our PHI will not help us seek or engage in treatment. It would be active sabotage. People will lose trust with their doctors and other mental health professionals. We may become afraid of attempts to coerce us into institutionalization.

And as someone who grew up the victim of child abuse, I don’t believe all families protect and care for minors well. I don’t think parents need easier access to their children’s health information, which they already have a great deal of access to. This could disproportionately impact marginalized youth, such as LGBTQ+ kids.

Privacy does not evaporate when you are mentally ill or have a substance abuse disorder; it becomes all the more important, and I urge OCR to keep this in mind.

.    .    .

Views expressed above are my own. 

On (not) writing (every day)

Funnily enough, Stephen King and I aren’t the same person. Though he too experiences chronic pain as the result of being struck by a car in 1999, his advice to write every day doesn’t work for me. Much of my time is spent troubleshooting in an effort to barely survive.

I am autistic, queer, chronically ill/in pain, investigating a possible minor and persisting TBI from an injury in 2016, and I have debilitating mental health disabilities. I live largely in poverty and unable to work the amount of hours I need – relying on friends and family more often than I’d like, struggling to get benefits.

I did, in fact, win November’s NaNoWriMo 2018 with 56k words. I did write the majority of those days. The toll was a lot, and I’m still recovering, hoping to try and make edits to a novel and continue the draft of another.  I could make points about how it is possible for both of the facts – struggling to survive and winning NaNo – to exist within one person’s experiences… 

…That NaNoWriMo fills me with joy and energy, that working on my novels is easier than other tasks because I actually find enjoyment in it instead of the monotonous echoes in my brain telling me horrible things and immobilizing me entirely. That my creative writing and other tasks require two totally different types of energy.

But mostly, I write those words, particularly the ones about Stephen King, as a head-off to the inevitable dredging up of examples of people like me who accomplish the sort of things other people think I can and should be accomplishing. (Also, Stephen King is an award-winning, prolific, author, and I am not). Many people cannot write every day, even what you think is easy, ‘a couple of sentences’ even or ‘at your own pace.’ 

Some days, for some of us, we cannot even begin to open a notebook or computer document. We are consumed by our jobs, our family, our poverty, our illnesses and conditions, our stressors great and small. Also, maybe there are days we could force ourselves to write anyway, but at what cost? At what point should we sacrifice tomorrow, or maybe even the next week or month, for the sake of writing every day?

Certainly, there are a variety of writing communities, each with their own guidelines and ideas, and hopefully every writer can find a home somewhere. But I know I and many others will not be able to find homes in places that require us to ‘write every day.’

Some reading on writing communities and disability

• Are Writing Communities a ‘Game for the Healthy?’
• What Does It Mean to Be A Disabled Writer?
• Writing Culture Has An Ableism Problem

 

Reckoning with less than historical eugenics and present politics

Eugenics, Kavanaugh, and Trump administration politics

North Carolina historical marker. “Eugenics Board: state action led to the sterilization by choice or coercion of over 7600 people, 1933-1973. Met after 1939 one block E.”

I was with a friend in North Carolina as the confirmation of Brett Kavanaugh unfolded, and stopped by the NC Eugenics Board historical marker completely by accident. I looked up at it in reverence to the victims and cold anger at the utter denial of bodily autonomy and the ableism and the classism and the racism and the other discrimination.

I look solemn in another picture I took with me in it for a reason. Because coercion and involuntary sterilizations of disabled people, people of color, poor unwed mothers, etc. were the norm protected by state laws and haven’t been fully taken off the books in some states. All states have a reckoning with eugenics in some form. Some more than others, some still more than others. It was not an isolated movement. It was not a one-off deal, a bunch of supporting scientists with no following.

I got close and looked at it. And even if I touched it, maybe, I wouldn’t get as close to the memory of eugenics as still-living survivors of the 20th century wave of sterilization and the sometimes still-standing institutions. But in other ways, eugenics is alive and well and we have a present-day set of scenarios unfolding. In May 2017, I talked about being against eugenics, and for a future that includes disabled people for Blogging Against Disablism Day:

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.

I didn’t even get into Brett Kavanaugh-kind of ideas at that juncture. I hadn’t gotten there yet, because the sheer amount is massive and a lot to touch on in one post. I have a well-read interest in the history and condemnation of eugenics, now and then: I know what it does. What it can do beyond what it is doing now.  I am scared by Brett Kavanaugh’s total disregard for disabled people’s – and everyone’s – bodily autonomy. I am scared by the people who so easily think like he does. And so much more.

I am scared of an ultra-right wing Supreme Court. Eugenic sterilization laws were laws. They were legal. They were upheld by the Supreme Court in an 8-1 ruling. We need to be worried about what becomes legal. But I am also furious, and not going to stop screaming about eugenics, now and then, and justice and equity and rights from the rooftops, and so much more. It does matter: here’s a list of local, state, national, and international progressive wins since the election.

If you can, you should, too. We cannot write eugenics off to the past when the 20th century specter is looming large – and has already arrived in some ways. And eugenics doesn’t always look like the horrors of Nazi Germany the American 20th century movement inspired, though sometimes it can. (It is not always easy to recognize eugenics when it is cloaked under so many different names and language. In a future post, I will attempt to gather together some signs.)

If you have the ability, when you can, name eugenics. Call things eugenics when they are, including political actions and attempted laws and repeals of laws. Take care of yourself, but if you are in a position to do those things, anything less is a disgrace to allow it to slip into tacit acceptance into most people’s minds. To have it not be an ideology and movement and pseudoscience that is fought against is a disgrace to past and present survivors of eugenics.

 

Autistic pride is my rebellion (or, why I can’t celebrate Father’s Day)

Yesterday was Father’s Day, which I cannot celebrate. Today is Autistic Pride Day and June is LGBTQ+ Pride Month, which I embrace. It was also the Baltimore Pride Festival yesterday. I put on a Noncompliance is a Social Skill shirt and made an “Autistic Disabled LGBTQ+ Pride” sign, and trekked off. For some, those celebrations aren’t mutually exclusive, but for me, Father’s Day is not one I can celebrate with the others.

“it was said they loved the stars”

It was said they loved the stars:

Enough to carry stardust ever so gently in
pockets lined with meteorite shards, wrapped
in wax paper for fire-starting, a return to origins.

I also wore a B’tzelem Elohim genderqueer Star of David patch. I am a genderqueer and nonbinary Jew-in-progress. B’tzelem Elohim. [Created] in the image of G-d. Not a mistake. Never was, never will be. Some in my life have said otherwise, including my father. I am tired of keeping it a secret online, of indicating the existence of a trauma history but being afraid of saying why.

Enough to try and forgive the father who left burn
marks in the wake of their scarring scorching (re)actions
Who sharply laid blame at their feet and swore
on the flames consuming all the mistakes made

Some in my life have said I’m a mistake and worthless, including the reason I cannot celebrate Father’s Day. I did try to work it out and possibly forgive him, but he never was sorry. I was never the child he wanted. I was never “normal.”

I had a hard time making friends. I said things that didn’t match my tone. I took things literally. I went on long, excited infodumps about extremely passionate interests of mine. I had meltdowns. I had shutdowns. I was fidgety and hyperactive. I had attention issues and problems at school. I had a hard time with conventional communication and reading body language/tone. And over time, I became insolent, aggressive, and volatile, following years of his verbal and emotional abuse.

My disability traits don’t actually matter here, because I never deserved it. Sometimes, that’s hard to remember, because all of that told me I don’t have inherent value as a person. And other things exacerbated his treatment of me, like the occasions he had too much to drink. Through the years, I blocked it out. It floated back in late teenage years, when it was safer to do so. So I tried talking about it: “When you do X, I feel Y.” Then: “If you don’t stop yelling at me, I will end my visit and go home.” I concluded that nothing I did would make that happen. After college, I finally gathered up my nerve.

And also enough to face their father and walk away from the
words and epithets of (dis)grace and turn their face to
G-d instead, found among the shul’s engraved Stars of David
And in the Etz Chayim prayer’s high note of A-do-nai,
And in notes before and after, calling upwards

Enough to embrace what is cold and distant to our eyes,
points in space where no one could ever reach, the fiery fusion
of atoms we can’t get get close to.

During college and since then, I’ve relied on a multitude of things to get me through. I found pride in being disabled and autistic. I found words for my gender identity. I made and still have friends. I stopped talking to my father. I adopted a cat. I found a psychiatrist who treats me like a person, and believes me about things. I began converting to Judaism, where I am finding coping methods in the ritual and prayer.

And I will never be able to celebrate Father’s Day. I hope everyone knows that it’s okay if they can’t, either. Or if they have to pretend so nothing bad happens. Or if they just have complicated feelings. I hope you can celebrate whatever you need to, commit whatever acts of rebellion you need to.

Autistic pride is my rebellion; the personal and the political. Not just against cure culture and ableism, but everything he disparaged. Autistic pride says my life is mine, that there are so many things he never took from me. That if I have pride in being autistic, disabled, and LGBTQ+, maybe I can have pride in the rest of myself. I try to celebrate myself, in the hopes that I will eventually feel like enough. I try to celebrate myself, because there are so many things I am and so many things I love.

It was said they loved the stars
It was said they loved the stars, and it was enough.

A documentary about “scary” kids scares me on behalf of the kids.

There’s a new documentary out that I don’t think I’m going to watch. It’s titled “A Dangerous Son.” It’s an HBO documentary that tells “a story about families with children who have psychiatric disorders that lead to violent behavior.” Mostly because I have already read all of those stories. Again. And again. And again.  

And I have found them incredibly disturbing each time – but on behalf of the children who are being written off and exploited. Especially because, as Mel Baggs pointed out in a comment: Across violent and abusive sets of environments, we – the kids – are the only ones seen as having a violence problem.

And those environments are so very often the context for “violent outbursts.” Like mine.

People considered sending me to a school for kids with behavioral problems, after therapy and medication didn’t work to quell my outbursts. Because they were going after the wrong thing: It must, the psychiatrist said, be Oppositional Defiant Disorder and anxiety. Not trauma. Not communication barriers. Not what was modeled as social behavior. Just that I was a rebellious, insolent, violent kid.

A throw-away diagnosis. A throw-away kid.

And I already know the kinds of things they’re going to talk about in the documentary: Desperate, at our wit’s end, we’re scared of our so, so very violent and mentally ill kid. But we’re out of treatment options. The psychiatric hospital is out of beds.

.  .  .

It’s possible to advocate for and with children who are struggling and vulnerable with, as I pointed out in 2016, some level of dignity. According to NPR, the director of the film “wanted to show how challenging this situation is both for the child and the family. Often, people assume a child’s behavior is a type of parental failure.” Further, director Liz Garbus told NPR, “Destigmatizing families like Stacy’s who are going through this and seeing how hard they’re trying is really important.”

Well, yes, in part it often is a parental failure, along with the psychiatric industry and other adults in the children’s lives. Whether it is directly perpetuating abuse and violence, enabling it, or failing to recognize the abuse and trauma, it is a failure of adults in their lives. You know what else is a parental and societal failure? Filming kids at their most vulnerable as a way to showcase how “challenging” it is.

You know what’s really important?

Not, as the NAMI spokesperson in the NPR article implies, framing it as a choice between psychiatric beds and intractable violence at home. Because it does not surprise me and my friends that one of the kids’ behavior “didn’t improve” when he got home from inpatient. Because we have witnessed the violence and hostility of inpatient institutions.

Maybe a focus on trauma-informed care and removing sources of abuse and violence in the kid’s life. Maybe that’s also important. Maybe it’s important to fight for community-based services and training providers need instead of more psych beds.

It’s possible to advocate for struggling children with dignity.

.  .  .

Savannah Logsdon-Breakstone wrote an article on their blog following Newtown and a particularly bad Gawker article written by a parent about her 13-year-old son called “I am Adam Lanza’s Mother.” In it, Savannah describes being one of the “scary kids,” the right to privacy, and the dangerous assumptions and dismissals people make. Every word of the piece is important, but here is a snippet:

My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions.

Having been one of those scary kids is scary… What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose.

The author of the “I Am Adam Lanza’s Mother” piece is in the documentary.

.  .  .

And what if filmmakers had turned a camera on me capture my worst moments? Then what? Would anyone have seen the context? Would anyone have seen a vulnerable child? Would anyone have stopped to think about the young person whose future they’re so willing to damage? What this might do to them on every level of being?

No. They wouldn’t have, because it’s already happened, over and over again, to others. They chose to exploit. But they could have provided sensitivity and trauma-informed care to a young, struggling person instead.

However lost in life you may think we are: “None of us are lost causes.”

 

The NYT antidepressant article: what it does – and doesn’t – say

There’s a New York Times article on mental health – and reactions to it – making the rounds on my social media feeds. The article under debate is “Many People Taking Antidepressants Discover They Cannot Quit.” And the NYT has a less than stellar track record on mental health. They’ve run articles on whether we should construct a new wave of “modern asylums.” Based on people’s reactions, and the NYT track record, I mostly expected the antidepressants article to be shaming medication use. It wasn’t. It discussed antidepressant usage and prescribing habits. And as the title promises, the people who can’t go off them, due to extensive and protracted withdrawal symptoms.

It’s not necessarily well-written as a public health article. And it is not an article that is telling people to stop using their medications long-term. Yet the discussions I’m seeing are talking about med shaming and taking meds long-term. Which, if you feel like long-term medication is most beneficial to you, you have every right to it. At least some of that discussion, I think, is rooted in fear that the article will contribute to medication shaming. I do get that. I’m on meds, including an antidepressant. I like a couple of them. I don’t like it when people think I shouldn’t have access to them because they think all meds are the same or evil.

But the article is about effects of withdrawal when people try to go off of them. It is about people not knowing these risks beforehand to make an informed choice. It is about doctors not providing informed consent. My perspective is shaped by the fact that I had been medicated for a long time before I was able to assert more control. Not “taken medication,” but “medicated,” with little information on the drugs I was being told to take. I am now on two that I cannot taper off of right now, because I’ve been on meds for so long. I know; I’ve tried. So: informed consent is a thing that should exist.

The article discusses people being unable to get off medications, and the response I’m seeing is to talk about it being okay to take them long-term. But not everyone on antidepressants finds an adequately stabilizing one. Not everyone on antidepressants wants to be on them forever. People get to make choices about if what the medication is doing is worth it. If a person wants to go off of a medication, reassurance that it’s fine to be on it long-term is a response I do not see as helping.

So I find it disconcerting that people would turn the subject to the stigma of taking long-term medications here. We need to be talking about side effects. We need to be talking about withdrawal. We need research on effects – positive and negative – that can help guide informed consent and people’s medication choices. I do understand stigma and medication shaming exists. If people do that in response to this article, or anytime, it’s inappropriate. And I have been on the receiving end of medication shaming, too, and it’s demoralizing.

But I don’t think criticizing the article for what it doesn’t say – as a preemptive defense against med shaming – is useful. We should critique and criticize based on some of its actual flaws: it is written with, perhaps, some sensationalism. It lacked clarity at some points. It may deter some people from finding something that works for them. But it does not argue against people’s personal choices to stay on antidepressants long term.

Stephen Hawking also used AAC: notes on the disability discussion

Acknowledge Hawking’s AAC use – and also know and remember that everyone deserves access to communication supports.

Stephen Hawking, the disabled theoretical physicist and cosmologist with ALS, recently died at the age of 76. I love the stars and space: enough to embrace what is cold and distant to our eyes, the fiery fusion of star atoms we may never get close to. Sadly, this love has not allowed me understand theoretical physics, even in layman’s terms. 

But I’m disabled, too, so I understand parts of that bit. I can talk out loud, but not always. What I say may not always be what I mean. I try to write more than I talk. I can walk, but it’s often painful, and limited to half a mile at once. I don’t use AAC or a wheelchair full-time. My main advocacy has been with the autistic and I/DD community. My values are rooted in access for everyone: people who don’t have adequate communication supports, and people who use AAC, even if they didn’t turn out to be geniuses. 

So that’s where I’m coming from for the rest of the post. Okay? Okay. I have something to say about the disability community’s conversation on him. We’ve been fighting the erasure or denigration of his disability by non-disabled people, including the media.

(For those who missed it: there is a lot of “in spite of disability” and “free from his wheelchair” language when his disability status is discussed in the media. Hawking’s disability was an important part of who he was. He achieved all his work informed by his disability, not in spite of it. And death is not better for disabled people: support us in life, not laud our deaths.)

Which, yes, be angry about that! But many of discussions only note his power chair use. Which the erasure of his power chair is a problem. But I often do not see a similar emphasis on his AAC use and how that’s an equally valuable part of his disability experience. I want you to start valuing his AAC as much as I hear you talking about his power chair. I am not asking for you to prioritize him being an AAC user over that. I just want you to grant his use of AAC the same level of importance (Some of you are, and I see you! Thank you).

Hawking himself stated access to communication supports are critical to make available:

I want to use my high profile to raise awareness of issues around disability and communication. Recently, my communication system broke down for three days, and I was shocked by how powerless I felt. I want to speak up for people who live their whole lives in that state. My hope is that the kinds of technologies I have trialed and helped develop will become easily and cheaply available to all who need them. We need to make sure this technology becomes available to those who need it.

Hawking also freely acknowledged the significant privilege he had: “But I realize that I am very lucky, in many ways. My success in theoretical physics has ensured that I am supported to live a worthwhile life. It is very clear that the majority of people with disabilities in the world have an extremely difficult time with everyday survival.” 

Beyond Stephen Hawking, access to communication supports is a right, for everyone. 

So are things like presuming competence, which doesn’t mean “treat people like they’re not disabled,” but “treat them like a person with strengths and support needs.” As Julia Bascom wrote in 2014 about a thing that happens sometimes involving autistic children with high communication support needs:

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…. 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…

…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.

Make sure you are acknowledging that Stephen Hawking used AAC as part of his disability experience. That disabled people who aren’t theoretical physicists use AAC, too. That disabled people who aren’t secret geniuses and don’t have adequate communication supports have things to say. The potential for, or existence of, “genius” and “gifts” is not why people have the right to communication supports. We all have decisions to make, along with needs and desires to express.

We all have something to say, no matter: our level of education and employment status, how much support we need to make decisions, if we rely on social safety nets or not, what disability we have and how it impacts us. We all have something to say, no matter what.