A New Chapter

How do I say that I am changing?   How do I say that my life is taking shape rapidly and my new form is rising over the horizon, the sky streaked with my blood, sweat, and tears? It’s an opalescent self-rise, and I can’t capture it on camera.   I’m outgrowing this blog.   …

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#DoctorsAreDickheads isn’t attacking the NHS – it’s giving it an opportunity

Queerly Autistic

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If you’ve been anywhere near the Twitter-verse in the past few weeks, you may have seen a lot of hullaballoo about a hashtag called #DoctorsAreDickheads.

The hashtag (which got its rolling start from disability activist Kim Saunder, off the back of a video by Stevie Boebi about her EDS and POTS diagnoses, and the endemic misunderstanding, misdiagnosis and mistreatment) allowed many people across the world, with many different disabilities (and quite a few with none), to discuss and elevate their stories of being ignored, gaslighted, abused, mistreated and even injured/killed by the medical profession. This then spawned the #HealthcareWhileColored hashtag (created by disability activist Imani Barbarin) an equally, if not more, important opportunity for people of colour (particularly black people) across the world to broadcast the very specific difficulties and abuses that institutional racism in healthcare inflicts upon them.

These hashtags were framed by seemingly endless stories of the horrific mistreatment…

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Our Recent Study on the Overlap between Autism and Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorders

Science Over a Cuppa

Although much of my research efforts to date have focused on the genetics of autism, over the last year or so I’ve turned a significant part of my attention to a particular group of connective tissue disorders (CTD) and their overlap with the autism spectrum. The CTDs I’m referring to are known as Ehlers-Danlos Syndrome (EDS) and the closely-related Hypermobility Spectrum Disorders (HSD).

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To be frank, much of my interest in this area has stemmed from my own experience and recent diagnosis with an HSD, which has put me in contact with a number of fantastic online support communities on Facebook for EDS/HSD and its comorbid issues like postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS). In coming to know these communities and learning from their vast stores of knowledge, I also began to notice that there was a lot of talk about autism on…

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Reclaiming Evil: Why do people blame political violence on mental illness?

Sometimes a Lion

Over the past few days, I’ve struggled with the aftermath of the Tree of Life Synagogue shooting. As a Jew, I mourn the loss of eleven irreplaceable Jewish souls. As an American, I am incensed at the irresponsible and dangerous rhetoric from the Trump Administration and its allies that brought us here. And as a disability rights advocate, I am worried about the tendency of many to blame every mass shooting, no matter how clearly political, on the same consistent scapegoat: people with mental illness.

After each major violent attack on a marginalized group, we hear commentators say that the perpetrator must have been crazy. In the hours after the synagogue shooting, President Trump pronounced the murderer “a madman, a wacko” while plenty of commentators took to social media to similarly attribute the gunman’s actions to psychiatric illness rather than his stated murderous ideology. I’ve heard from many fellow disabled…

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Performing Pain: Autism

Autism and Expectations

I am not good at communicating my pain. It’s my greatest weakness. I am terrible at asking for help, I am terrible at reaching out to you, and I am worst at this when I’m distracted by physical discomfort.

I have often been told what a “coper” I am. How well I cope with stressful situations, how well I cope with shock and pain. Not because I am coping, but because I communicate these things differently.

What is pain? How do you quantify it? How do you get across just how much or how little you are in?

I am autistic, which means that I have a social communication condition, which means that I do not naturally or intuitively understand or (perhaps more importantly) perform social communication.

Most of the time I can do it all. I have learnt your ways, I may not understand why THIS QUESTION needs THIS…

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When powerful people don’t care if you live or die… — Cussin’ and Discussin’

Much of this explains my qualms with most Cleveland Clinic doctors: "If you are disabled. If you are cognitively disabled. If you are developmentally disabled. There are people who literally do not care one way or the other if you live or die." Please, read Mel Baggs' full blog on this subject: This post is …

Continue reading When powerful people don’t care if you live or die… — Cussin’ and Discussin’

Hillary Krzywkoski: Different, Not Less

An Autistic parent has every right to gestate and birth their child without being abused by *any* birth worker. A pregnant Autistic has every right to self expression, caring and nurture, nutrition and health resources for as healthy a pregnancy and birth as possible. A pregnant Autistic has a right to *informed consent*. An Autistic parent has every right to structure their own home how they need in order to parent successfully, they also have every right to determine their sexuality and fertility, they have every right to privacy and fulfillment of family life without harassment, bullying, and shame.

Our Autistic History (Month)

I am an emerging writer and artist with a story to tell about my autistic family’s past struggles. My husband and I have faced adversity when in the formative years of building our family, beginning with our marriage and the conception and birth of our first child, marking a years long struggle for parental autonomy, free from bullying and abuse. I have sought healing through my art and writing this last decade, and have entered my narrative into public discourse via the arts. I have been fortunate to have my work circulated recently at the 2017 Ruderman Foundation Inclusion Summit. I am speaking out against abuse of autistic mothers and fathers. Much of the abuse begins on the home front– through our extended familial relationships, to be recognized and respected as a competent and worthy parent, to be allowed to be fertile and strong, to be allowed a legacy. I…

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