Feature image via Kayden Clarke’s memorial GoFundMe
Intro by Emily
Xander McDonald wrote this reflection on the lack of LGBTQ and disability-sensitive services in Arizona in the wake of the police killing of Kayden Clarke, an autistic trans man from Arizona who was consistently denied access to needed services. Kayden Clarke’s murder is not an isolated event, and as we mourn his death, we also must mourn the inexcusable police violence and murders of people of color, including trans people of color — particularly black trans women, who bear the brunt of violence against trans people — and disabled people of color. Since systems of oppression work together, we also have to work together to combat racism, sexism, homophobia, transphobia, and ableism and create safer spaces in our communities.
The LGBTQ community won’t embody social justice until we recognize that discrimination against other groups is our issue, too. Xander, a trans and autistic community organizer, has witnessed and experienced the ableism, homophobia, and transphobia in current state services that contributed to Kayden’s murder. In response to Arizona’s failings, Xander has created support for autistic and other disabled LGBTQ people in Arizona through a group called Purple Lighthouse.
Kayden Clarke was an autistic transgender man killed by Mesa police on the morning of February 4, 2016. I didn’t know Kayden, but I had some friends who did. I am also autistic and trans and I live next door to Mesa. We shared common experiences. I watched his YouTube videos after Voc Rehab had dropped him and I thought, “Yeah, that’s exactly how Voc Rehab dropped myself and my daughter out of the program too.” Gatekeeping. You see that in Arizona over and over again. That’s why we’re 50th in the nation for disability funding, 50th for mental health funding.
I was at an Aspergers meeting years back when the Mesa police officer from the CIT program came to speak. He did not know what the term Aspergers was. We were all a bit alarmed at his negative attitude toward disabled people. His idea of autism was Rainman. We all tried talking to him, explaining things like how we can lose our ability to speak in crisis, but it didn’t do any good. He was not open to listening to us. We came away from that meeting feeling that a police shooting was bound to happen to an autistic person in our area. Fear of the police has run deep in the Phoenix autistic community for years. We read about the deaths of Stephon Watts from Chicago, Steven Washington from Los Angeles, Jeremy Mardis from Louisiana. No one knows how many disabled Americans are killed in police encounters every year, but the ACLU says it’s in the hundreds.
There’s more going on than the lack of training for first responders. Arizona has all kinds of tricks to keep autistics out of services. Only the most severe, about six percent of about autistics, are able to qualify for services from the AZ Developmental Disabilities Division & AZ Long Term Care. We’re not like other states that have a specific Medicaid waiver for autism. Some autistic kids, if they are at poverty level, can get help through the Behavior Health system, but they get kicked out at age 18. You have to have a specific diagnosis to get into the adult system and autism is not one of them. Having autism works against you. When you get denied, they will say that your low functioning scores are due to autism and not to the qualifying condition for SMI status. Without SMI, you won’t qualify for a case manager, housing, referral to vocational, etc. At most, you might get short-term counseling, maybe meds. With someone like Kayden, who had deep, ongoing issues, I could easily see how he would have gotten locked out of everything.
We have been shut off from avenues for advocacy. The Governor has an Autism Committee, but there are no autistic people on it. There are no autistic board members on the local Autism Society of America chapter, the Southwest Autism Research & Resource Center, AZ Autism Coalition, AZ ASSIST or the AZ Development Disabilities Planning Council. If you Google the websites for those organizations; in the photos, almost all of the people in these groups are white. Their meetings, events and conferences are often held at sites that are difficult or impossible to access by public transit and they don’t have Spanish language interpreters. Only the last organization, the AZ DDPC, has shown noticeable support for LGBTQ and POC individuals. The local disability advocacy organizations are focused exclusively on individuals who are in the Long Term Care system and the mental health advocacy organizations here aren’t very open to autistics either. There’s no advocacy or leadership training available to us. LGBTQ organizations and their usual meeting places aren’t disability-friendly. We don’t have a voice.
Before I was diagnosed as autistic, I was welcomed. I spoke to schools and at behavior health workshops. I attended a lot of meetings and I was active online. Afterwards, people changed. I wasn’t invited to lunches anymore with the other parents. I stopped getting asked to speak. People were distant and put their polite faces on. When I came out as trans a few years later, I was already on my way to becoming a pariah, so I was somewhat prepared. A few people referred to me as the “devil.” I heard I was called a “sexual terrorist” by someone who used to be a good friend. Before coming out, I stepped back from a nonprofit I had cofounded because they worked with children. I knew it had to be done. As expected, I was erased from that organization’s history.
I’d like to take a moment to acknowledge my white privilege. Had I been a person of color, it’s highly unlikely that my daughter or I would have gotten the correct diagnosis of autism. Nearly every blog I’ve ever seen about autism and race speaks of delays in diagnosis, challenges in getting services, and encounters with police. That it seems to be on its way towards becoming a norm terrifies me. Please tell me how do we get the typically conservative suburban helicopter parents who currently dominate the autism discussion to make space for others?
At my daughter’s urging, I started another group, Purple Lighthouse, for LGBTQIA autistics in Arizona about 3 years ago. Over time, it has grown to include any disabled folks who are LGBTQIA, plus our allies. Having peer support has been very helpful. We’ve had relatively little drama; it’s generally a place of hope and support. It’s been a place where people can find friends, sometimes roommates. I really wish we had resources to do more. Most of our members are very low or no income, which limits our choices. We’re too loud for a library meeting room. We’ve noticed that we get stared at when we are all together as a group, so having privacy to be ourselves is important. Transportation is difficult because our members get harassed on the bus so often; plus, bus schedules are limited. My original hope had been that we would get going and we’d find a group to sponsor us, but given the hostile environment in AZ, I don’t see that happening now.
I’d like the world to know that while autistic transgender people are misunderstood and have deeply challenging lives, we are not tragedies. We are not broken. We are interesting people worth getting to know. V. is sassy and goth girl gorgeous, and even though she gets constantly harassed on the bus, she holds it together and keeps going to work. D. is a ranch gal who can lasso people from her wheelchair and is willing to spend most of the day on the bus just to get a couple of hours of fishing in at an urban lake. B. copes with chronic pain and cancer by dreaming of the perfect ball gown. M. is passionate about saving animals and knows everything about cruelty-free makeup. S. & W. are amazing artists. I’m pretty good at gluten-free baking.
Our ability to access things that other people can access in times of need are restricted. Sometimes they are restricted because of how our disabilities affect us. But with planning, we can usually figure out accommodations or strategies. The negative ways in which many people perceive both autism and being transgender, those are the REAL barriers for us. I have seen plenty of hate and misunderstanding in the days since Kayden’s death, people challenging his gender, challenging his disability. I would like to see work done on addressing those kinds of barriers in an intersectional, inclusive way.
I’d like to find mental health professionals to partner with, to create a CEU for therapists on working with patients who are transgender/gender nonconforming and autistic. Paid support positions for peers with mental health challenges exist throughout the country. There needs to develop paid support positions for peers with autism. That will introduce Autistic culture fused with cultural competency. For that matter, please stop dividing people on whether they have a mental health disability or a physical disability altogether. Every organization serving people with disabilities should have an anti-bullying, nondiscrimination clause that includes LGBTQ with an accessible grievance system in multiple languages and communication systems. No one should be forced to live closeted lives out of the threat of losing the services needed to survive. We need more people to stand up to racism. If we work together to become lighthouses and shine our light so those adrift can see us more readily, then maybe we can save more lives.
Thankyouthankyouthankyouthankyou for this article. I’m autistic and have been wanting to read and engage with deeper commentary on this tragedy, but obviously major news outlets were never going to provide it. Thanks for sharing your experiences and expertise and keeping the conversation going!
Thanks for this ?
this piece is so important. absolutely love the part about D., B., M., S., W., and you.
It is, as always, an honor to be your friend. We don’t always see eye to eye on solutions, but we agree on the issues at hand. I am glad to see your passion to tackle issues has not faded. Much love, and I wish we saw more of you.
Glad you put this out there. I tweeted it in hopes that it would reach beyond the autism, feminist and QUILTBAG community to the parents, providers and police officers who need to hear it the most.
As someone who has worked in the SMI system for 8 years, you nailed so much of what’s wrong with the system. The Arizona system in general needs a huge overhaul.
It breaks my heart to see how the disabled and trans community separately are treated in this sorry excuse for a state. I wouldn’t be able to know some of the truth of being disabled and trans without Xander.
What I do know is that SO MANY things are broken in our state society. There are far too many avenues that allow people to die for no real reason. And I’m thankful for those like Xander who shed a light on it and hold people responsible.
I have Aspergers, and it’s weird how you feel like it is something you have to come out as and how often people will recommend that you just “do” things without any proper understanding of what it is like to be on the spectrum and the limitations. I work very hard to fit in in what is an incredibly social stimulating world and I don’t think the average functioning person gets how tiring that is on top of everything else.
Xander is very right , and as well even the state’s medicade system is greatly broke . it is ran by lawyers not Drs or of the such . a bitof time back there was a report that i had seen about the Arizona state system being forcedby a court to even help those who needed spiecial undergarments . it took a court order to get that for the people .
i had home help here at one time , one lady got all over me for being a trans and not a believer of some sort of higher something . she was screaming at me calling me a satan worshiper . and even more than i can post on line . then another person , she was sent away after she THREW my cat into another room and she threw him hard . after that , ACHSSS as it is called and Arizona Long Term Care / ALTC has since denied me any help .
but as it is ,, this same system let down Kayden and so many others … just so many ..
i guess it is better to load up my wheelchair grab my lariett and leave the fishing gear at home, and see if i can rope a fish ,, just to be able to live a little .. till they finally do me in .. and they have tried , even place me a second time on Hospice ,, yes 2 time survivor of the death bed …
Yup the only media instance with the right message about gatekeepers is Xcom2 – in that you either pull the strings with psionics or cure the problem more radically. And the first approach is easier.
Update: There was a candlelight vigil for Kayden last night in downtown Phoenix. I was not able to attend because I have a bad case of flu, but here is an article about the event. http://www.phoenixnewtimes.com/news/community-mourns-transgender-man-with-aspergers-killed-by-mesa-cops-8060481
Xander, I encourage you to reach out to one of the United Church of Christ conregations in the area. Meeting space is available with a warm welcome. You’d be welcome at my congregation, but we’re in Illinois. http://www.ucc.org
Some Purple Lighthouse members are also connected with a local UCC ministry, Rebel & Divine, which helps queer & trans youth. Last week, a wonderful young woman who was a member of both groups passed away and it’s hit us all so hard.
Meeting space would be nice, but really, our biggest barrier to meetings (or anywhere else) is transportation. Our people are getting harassed on public transit by riders and drivers. Phoenix is so spread out that the routes are challenging, it can take hours to get somewhere. Having a meeting with exhausted, stressed out people doesn’t work. I hope we can figure out something.
LGBTQIA disabled people need community though. I hope others across the US will read your comment and reach out to UCC for meeting space. I hope people read this and feel more inclined to give their disabled friends a ride to places. :)
Thank you so much for this.
Thank you for sharing your thoughts about a topic that isn’t addressed nearly enough in Arizona. As the community relations specialist for the Arizona Developmental Disabilities Planning Council, I want to clarify a few items I noticed in your post. We are proud that our Council includes two individuals on the autism spectrum who offer a much-needed perspective on employment, inclusion and self-advocacy for people with autism and their families. We have a culturally diverse Council, including persons from the Latino, Asian-American and Native American communities. We also strive to include a variety of cultural perspectives from our workgroup members, including voices from the LGBTQIA community.
Of course, we can always do better and we will continue to do so. Please reach out to us anytime with ideas about how we can partner to better serve Arizonans with developmental disabilities who may fall through the cracks of an imperfect system. You can reach me at sruf(at)azdes.gov.
Community Relations Specialist
Arizona Developmental Disabilities Planning Council
I’ll be happy to contact you. But your post underscores how very disconnected the local autistic adult community is. I’m one of the few autistic adults around who has heard of the DDPC. I attended DDPC meetings a few years back, during which time, I was never aware of any autistic members. Although I follow the DDPC on FB, but how would I or anyone else know there are autistic members based on what is sent out? There is a local group for Asperger adults that meets every month, not to mention there’s an informal grapevine on FB. Why aren’t your members engaging with the local community?
I wrote this a while back, I am an autistic Transwoman and I feel often disrespected.
You are a powerful writer. I wrote about Arizona, because the Arizona system is the one I know, but I know what you’ve experienced happens across the U.S. There are so many of us and few people notice us.
You’re a only few years older than my daughter and you’ve already experienced so much pain, so much hate from the world. I wish I could be there in person to sit with you, to listen to you and to learn from you. I hope you have people nearby to turn to on the bad days. I hope on the good days you keep speaking truth to power, because it is the young advocates like you and my daughter who can make people hear. You will make change happen. <3
And also, I often worry if what happened to Kayden will happen to me. Even though I live in SF, where there are lots of services, we still have a very classist and ableist police force.