19 June 2015

Call for PCA Story Submissions

This post is from a friend and fellow activist, Sarah Rizzuto. 



Call for PCA Story Submissions

Photo: Sarah Rizzuto (using a wheelchair) smiling at the camera.

Hi, everyone,
My name is Sarah Rizzuto, and I’m interested in assembling and publishing a collection of nonfiction stories about personal care assistants (PCAs) and the disabled individuals who employ them. If you have worked as a PCA, or if you have hired PCAs to help you or a loved one, I invite you to submit a personal account of your experiences, whether they are funny, frustrating, frightening, heroic, heartwarming, humiliating or anything in between.
Your submission should be true, no more than five thousand words, and sent to the dedicated email PCAStorySubmissions@gmail.com by September 1, 2015. If typing your submission is not the best way for you to communicate your story, I’m open to assisting you in any way I can. I will also make sure that all stories are kept confidential by changing the names of the characters and authors as requested. I hope that this will allow those who submit to feel more at ease in telling their stories.  
My hope is that I’ll receive enough stories to publish a collection that will target a broad audience. Many readers may know caregiving only through the lens of hiring someone to help an elderly parent; this collection will instead focus mainly on PCAs’ work with younger disabled adults.  All stories are appreciated.
Although I have editorial experience, I have not declared myself editor of this collection. I’m open to having co-editors and would love to hear your suggestions via email. The details will be worked out later. At this time, I’m accepting stories and will go from there based on your response.
My interest in this topic comes from personal experience. I was born with a disability called Cerebral Palsy. Ever since I was young, I’ve needed assistance with my everyday care. These include tasks such as showering, dressing, preparing meals, housekeeping, and being driven places. Although my parents still assume a caregiving role occasionally, I now, at the age of 33, live on my own. Even as I write “on my own,” I know that implies that I now accomplish everything without help. This simply isn’t the case and never was.
From elementary through high school, various adults were employed by the school systems to assist me. At nineteen, I entered college and took on the role of employer. Although I had no experience hiring, training and firing PCAs, I had to manage the whole experience. My quality of life was at stake. The young women I employed throughout college were diverse in their personalities, abilities and work ethics. Many of them were close to me in age. College was our common denominator, which meant that in the midst of laundry and grocery shopping were nights filled with break-up monologues, textbooks and bureaucracy. I knew that despite the craziness of college and juggling caregivers who were constantly late, blatantly rude and often tipsy with the ones who were punctual, respectful and creative; it was nonetheless a protected environment. PCAs were within walking distance, I had overnight care, and counseling services and on-campus police were a phone call away.
After finishing ten years of college, I filled out fifty applications to get on waiting lists for accessible housing. I considered myself lucky that I had to wait “only” two and a half years for an apartment. I then had to wait several more months until I interviewed and hired seven PCAs, covering all my shifts. Now, my pool of applicants is not confined to a college campus, and support isn’t as easy to reach. But just like in college, there are the moments with my PCAs that bring smiles, tears, uncertainty and complete appreciation.
Caregiving is more complex than just the stories of the disabled folks being cared for and/or directing their lives. It’s a nuanced relationship between the caregiver and the disabled individual. I look forward to hearing your stories and honoring your voices.
Peace and access,
Sarah
 
 




   

03 June 2015

The best advocates for people with disabilities

Content/TW: Discussion of ableism and abuse.

The best advocates for people with disabilities are other disabled people. Not their non-disabled parent(s), not their non-disabled teachers, not non-disabled researchers and professors, not non-disabled support or care workers or clinicians or therapists or professionals. Us.

(I preface these possible relations or positions as non-disabled because that is the relevant marker here. Obviously -- or I hope obviously, if you read this blog -- disabled people can be any or all of these things.)

If you tell a disabled person that their advocacy isn't effective because they're too emotionally involved or personally vested, what you're saying is that we should forget the trauma and harm visited on us for a false specter of neutrality -- a neutrality that derives from white masculine "rationality" and neurotypical supremacy.

The idea that intellectual, rational, neutral, distanced thoughts, speech, or advocacy are the best kind of thought depends on a way of expression that silences survivors, devalues femininity and neurodivergence, and replicates white dominance over emotion.

Let me make this plainer.

The disabled adult who survived years of abuse by classmates knows better than anyone else what a disabled kid abused by classmates in school is going through, understands without having to say anything the exponential harm created when teachers refuse to punish the instigators and only ever and always punish the victim for reacting, knows exactly what it is to be disbelieved by parents, targeted repeatedly by those pretending to be friends, forced again and again to return to the same doors.

The disabled adult who survived involuntary treatment aimed at fixing their supposedly broken, inferior brain or body knows better than anyone else what a disabled kid whose own parents who claim to love them keep making new appointments with the same doctors or therapists for the same marathon sessions of pain where no one believes what the kid says about their own feelings, where they tell them over and over again that they're hurting the kid for their own good, knows exactly what it is to be told that if only they stopped talking like that or moving like that or being interested in that then other people could accept them, or at least a fake version of someone who never existed but who everyone else believes is better than who they are.

The disabled adult homeless, disowned, out of work, stuck at home or in bed, body flaring up in pain, shaking, triggered, self-harming, using, incarcerated, committed, still healing from childhood abuse, isolated, taught to hate themself and everything about themself -- that disabled adult is exactly where others have been, has been where others are, knows their own almost as well as they know themself.

We don't need to explain ourselves to each other. We understand the forced eye contact, the leg braces, the never being allowed to say no, the someone else always being the expert on our own bodies, the always surviving new traumas, new violence heaped on old. We get it.

We take care of our own. We are fierce. We don't need your acceptance or your approval. You can keep trying to relegate us to your tokenizing idea of what you think we should be doing but we know exactly what it is. It is a lie. You would have us either pretend our experiences don't exist so you can treat us as really just like you (that is, not really disabled) or you can co-opt our experiences into a more palatable, easy to digest, non-threatening version for your daily dose of inspiration porn (enough to remind you were disabled but not so much that you remember the power of who we are).

No one knows better than us. No one can advocate better for us than ourselves. In any context. This is precisely why we need more sick and disabled people as nurses, as doctors, as healers, as lawyers, as care workers, as PCA's, as therapists, as teachers, as trainers, as lobbyists. Living fiercely, living proudly, relying on the strength of who we are and what made us to possibly be the support for each other that we never had from anyone else.

Don't fucking tell us that our experiences make us "too close" to the issues. If you have to resort to that, you are part of the ableism problem.

26 April 2015

Don't listen to them.

Sometimes I am asked, if I could say anything to my younger self, or to an aspiring organizer just starting out, what would I say?

This is the answer I give. This is what I wish I had known. This is what so many of us need(ed) to have said to us:

People in power will say anything to silence you. 

They will play to your emotions and guilt you. They will make you question whether anyone you love truly supports or understands you. They will tell you that you'll never get anywhere with whatever tactics or tone you're using.

They will tell you that what you want is unrealistic or impossible. They will tell you that you don't really know what you're talking about. They'll hit you with numbers. They'll hit you with condescension. They'll hit you with deeply invasive personal attacks.

They'll water down everything you demand and try to co-opt your movement. They'll even hit you with flattery and try to win you over.

Don't listen. 

And, just as important, as scary, as necessary to know:

People in community with you will hurt you. 

They will question your values. They will make you doubt your own politics and faith. They will try to turn your friends and fellow activists against you. They will take the language of social justice and twist it to their own ends.

They will attack you with bitterness and rage for even the smallest mistakes. They will make it all about them instead of about the community or the movement.

They'll come down on you for falling in love with theory. They'll come down on you for not understanding theoryspeak.

They'll shame you for every action you don't or can't participate in. They'll tell you to get out of the movement, that you never belonged in the first place.

Don't listen. 

14 April 2015

Undoing Racism & Anti-Blackness in Disability Justice

Content/TW: Anti-Blackness, racism, police brutality, ableism, descriptions of violence

The post below the picture/fold appeared in shortened form as "Tackling Ableism and Racism in the Criminal Justice System" in the ENDependence Center of Northern Virginia's April 2015 newsletter for a special issue on intersectionality. In the wake of the unfolding catastrophe with Kayleb Moon-Robinson, an eleven-year-old Black Autistic student from Virginia convicted of virtually fabricated felony charges for an incident stemming from kicking a trash can and now facing potential time in juvenile detention, it seems especially relevant to share in its full, original version (with one small correction).

Not only Virginia, but nationally, we face a continued crisis of centuries of surveillance and policing of racialized bodies. Indigenous, Black, Latinx, and Brown people have always been the targets of state violence and the violence of structural racism. When combined with ableism, those at the intersections live in fear of constant violence without any hope of justice. It's long past time that our movements, our organizations, our activists in the disability community start addressing our replication of white-centric structures and start challenging racism -- and anti-blackness in particular.

Here's a start: Morénike Giwa-Onaiwu's petition for Kayleb & the ASAN statement on his case.

#BlackLivesMatter #JusticeForKayleb

Photo: Kayleb, a young Black kid with glasses, wearing a gray hoodie, standing outside in a snowy driveway.

--

In February 2010, a passerby saw a young Black man outside a middle school library in Virginia and called the police to report a suspicious black male, possibly armed. After police arrived, an officer approached him, demanding identification. The young man outside the library appeared obviously agitated and distressed, and attempted to walk away calmly several times. By the end of the encounter, eighteen year old Reginald "Neli" Latson and the officer had a violent altercation, and Neli was facing over ten years in prison for the crime of going to the library while Black and Autistic.

In 2009, two police officers approached a young South Asian man sleeping on the sidewalk. One officer claimed the young man pulled out a knife, which his partner later denied ever occurred. The officer fired four shots, murdering Mohammad Usman Chaudhry for the crime of sleeping outdoors while Brown and Autistic. The internal affairs review of the shooting found the use of lethal force had been within the scope of department policy.

Over the past six years, however, the largest autistic rights organizations led by autistic people have only occasionally addressed police brutality against disabled people. Only recently have our organizations issued public statements in such cases, demanding real justice for members of our community impacted by the violence of our criminal injustice system. It is no coincidence that most disability rights organizations, with relatively few exceptions, are led entirely or mostly by white people with disabilities. While police brutality certainly impacts white disabled people, such as eleven year old Emily Holcomb, arrested and removed from her school in handcuffs after defending herself against violent physical restraint, disabled people of color are particularly vulnerable to state violence.

Many activists within the autistic community will describe ignorance borne of ableism as the root cause for police violence against autistic and other disabled people. They will urge better outreach to police and prosecutors and training on developmental disabilities as the solutions. Yet they will rarely, if ever, acknowledge the equally insidious impact of structural racism not merely on which of us are most vulnerable but also on how our community responds. Police training is important and useful, but no amount of awareness training will erase unconscious ableism and racism. Outreach can lead to better outcomes for some, but those of us who experience multiple layers of marginality cannot rely on police as an institution to protect or serve us. Before they hear our presentation on respectful interaction with autistic people, they see Black and Brown faces and project racialized criminality onto neurodivergent bodies marked doubly by race and disability.

This is what intersectionality means: to practice social justice in ways that grapple with the complex impacts of multiple systems of structural oppression (or systemic injustice, if you will). For those of us who are non-Black autistic activists, that means recognizing that behavioral compliance, indistinguishability, and conditionally passing as neurotypical can be tools of survival for Black autistic people. Resistance to arbitrary norms of abled and neurotypical existence can take multiple forms. Survival and resilience can mean navigating complicated tensions between out and proud autistic existence and safety from racialized violence. Intersectionality demands complexity without easy answers or simple slogans, because the real lives of everyone in the movement are infinitely more complicated than single-issue politics can recognize. Intersectionality requires thoughtful organizing and intense labor if we truly seek to build more just and equitable communities.

24 March 2015

5 Ableist Reasons Autistic Bloggers Lag Behind


(Autistic tangent/photo description: So the title of this post contains the phrase "Ableist Reasons" and the word "Bloggers." I thought I'd find a picture of me typing on a laptop, but couldn't find one, so I settled for this photo of me at the University of Victoria in November 2014, giving a talk appropriately named "The Ableism Crisis: Violence, Marginality, and Disability Justice." So the slide says "The Ableism Crisis," which means I get to pretend it's related to this post, which I guess it is, if indirectly.) 

I've been in the autistic/autism blogging world for a few years now, and while there have certainly been folks at it for much longer than that, it's been more than long enough to notice this one trend: blogs mainly about autism written by non-autistic parents of autistic kids are much, much more likely to attract ridiculously large audiences than blogs mainly about autism written by actually autistic people.

This trend remains largely true even for autistic bloggers who've published their own books (or contributed to books), autistic bloggers who are also parents (whether of autistic or non-autistic kids), and autistic bloggers who post fairly frequently (which I've not been doing so much for the past year or so).

(There are only a handful of exceptions, including John Elder Robison, better known for the several books he's authored, and Landon Bryce's ThAutcast. And of course, it's important to mention that both John and Landon are white men.)

The purpose of this brief post isn't to rag on non-autistic parent bloggers, especially those who've been fantastic allies to the neurodiversity movement, but to discuss some of the deeper ableist reasons that autistic bloggers just can't match pace with non-autistic bloggers (parents being a main constituency, but certainly not the only category of non-autistic bloggers who write about autism). The purpose of this post is actually to talk about some of the deep-seated prejudices that result in the disparity in readership so we can start untangling and challenging them. These reasons are all related to each other, and not entirely separate, but worth talking about if allies (bloggers and readers alike) truly want to center the voices on autism that matter most -- those of actually autistic people.

1. Autistic bloggers are automatically suspect as frauds, especially if they self-identify.

Because of horrifically ableist ideas that autistic people are incapable of having ideas, a sense of our own selves, or emotions -- let alone cognitive grasp of other people's perspectives as separate from ours or the ability to express ideas of our own -- autistic bloggers will be accused of lying about being autistic or otherwise being fakes. Because of the monopoly of the psychiatry/medical-industrial complex over access to a diagnosis (and therefore "legitimacy" as autistic), autistic bloggers who self-identify as autistic but who don't have a medical diagnosis are especially at risk for accusations of fraud. But even autistic bloggers who do have formal medical diagnoses are frequently accused of lying about being autistic. After all, autistic people can't write words or communicate to others since we are so self-centered and locked inside our brains.

2a. Autistic bloggers are presumed to be exceptional instead of representative of many autistic people.

Even if an autistic blogger is believed about their status as autistic, they will be questioned about the applicability of their experiences, ideas, or opinions to any other autistic person. At best, their blog will be treated as an occasionally interesting foray into one autistic person's musings about their life while autistic -- in other words, treated as a personal interest story, but not a source of reliable information, theories worth thinking about, or direction for either supporting autistic people or advocating for changed policies/practices.

2b. This is closely related to the assumption that "if you can write on the internet / keep a blog / respond to these comments, you are very high-functioning and Not Like My Child.

(We know of course that that's not true, since autistic bloggers have a diverse array of skills, abilities, impairments, and support needs.) And of course, if you dismiss an autistic blogger as irrelevant because of their supposed "mild" or "high-functioning" autism (things that don't actually exist), you're not going to treat their blog as a reliable or authoritative source of information or ideas about autism.

3. Autistic bloggers are thought of as writing only about their personal experiences, whereas many parent bloggers are welcomed as writing about "universal" or "shared" experiences (which also ignores other axes of privilege/oppression).

Again, this is a common manifestation of oppression -- members of an oppressed group are denied collective identity or experience through a rhetoric of "individuality," while members of the relevant dominant group have their experiences privileged as universal and default. It's important to note that the most popular (non-autistic) parent bloggers also tend to be white and from middle and upper-class backgrounds, which most certainly contributes to continued erasure of autistic people of color and no/low-income autistic people.

4. Non-autistic "experts" have presumptive authority to speak about autism and autistic people, while actually autistic people have to "prove" they are even able to speak about themselves as individuals, let alone our group as a whole.

For this one, oppression plays out with the assumption that members of the dominant group are treated as automatic experts/authorities with "objective" opinions while members of the oppressed group are considered incapable of having opinions or ideas that are "objective" and therefore valid to people beyond their group. In other words, people assume that things like having the letters PhD after your name, being a special ed teacher, working as a therapist or clinician, or researching autism at a university automatically make your opinion "objective" and authoritative -- and therefore worth listening to. At the same time, people assume that being autistic means you are automatically "too close" to the issue, and thus personally biased, to have an "objective" opinion -- and therefore that everything you say should constantly be doubted and questioned, even if it's about your own personal experiences.

5. Autistic bloggers are believed not to exist.

It's the only possible explanation for so much of the hateful, dehumanizing rhetoric about autistic people all over the internet. (Actually, it isn't, but it's what I tell myself so as to not be completely pessimistic.) Autistic people are believed not to be reading articles about autism, and certainly not to be blogging about it. If you believe that autistic people cannot express ideas, you won't assume that any autistic people are actually writing about being autistic anywhere. You won't search for those blogs, and you won't find them. On the other hand, you will think to search for scientific research on autism, blogs by (presumed non-autistic) parents of autistic children, and advocacy organizations for autism (also presumably run by non-autistic people).

And there you go. Five ableist reasons autistic bloggers lag behind in audience numbers, stability, and growth.  An ongoing source of frustration throughout the autistic blogging community, and one whose numbers are even more sharply divided -- most of the prominent blogs by actually autistic people are still by white autistics, with only a handful of exceptions. We're here, we're writing, and we'd like to think we're not doing this as idle, futile exercises with no one around to care or keep reading.