2023 Update

This is a personal blog started in 2011. It is no longer active, updated, or maintained. Unfortunately, it appears that I've also irreparably broken some of the links by accident.

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,


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.