This week, the Autistic Self Advocacy Network (ASAN) released a new policy brief on discrimination against people with intellectual and developmental disabilities in organ transplantation. In the twenty-three years since the passage of the Americans with Disabilities Act, people with disabilities have achieved much progress in securing our rights in a wide variety of settings. Unfortunately, the field of medical decision-making remains too often immune from civil rights law. In few places is this as evident as in the context of organ transplants, where our policy brief outlines widespread discriminatory practice. Many people with I/DD fail to even make it to the evaluation process, and those who do are frequently denied access to transplants on the basis of their disability. Eighteen years after the landmark Sandra Jensen case in California, it is long past time for action on this issue.
On Tuesday, ASAN, the National Disability Rights Network and Not Dead Yet met with senior leadership in the Department of Health and Human Services to urge the federal government to issue new guidance addressing discriminatory practices in organ transplantation. Our brief provides comprehensive documentation on this issue and offers next steps for regulators, legislators, funders and activists. Produced with the generous support of the Special Hope Foundation, this will be the first of several policy briefs produced by ASAN this year examining the issue of access to health care for people with intellectual and developmental disabilities.
We invite you to download a copy of Organ Transplantation and People with I/DD: A Review of Research, Policy and Next Steps on our website by clicking here. Help us spread the word about discrimination in organ transplants – together, we can achieve equal access for all of us.
At the beginning of March, our community came together to remember and mourn for disabled people killed by family members and caregivers. In a dozen cities, we gathered with our friends and allies to ensure that no one in our community would be forgotten. In doing so, we were reminded not only of the terrible things that too often happen to us – but also of the real value of communal space. In coming together, we are able to face even the most horrific of crimes.
As we approach April, this bears remembering. For many years now, Autistic people have dreaded April, knowing that Autism Awareness Month typically brings with it the worst kind of pity and fear-mongering. Does it really have to be this way? What if we built a different April, centered around the experiences of Autistic people ourselves? What if we stood up together to say awareness is not enough? This April, we are asking you to help us make a change for the better. Starting later this month, ASAN will be launching a campaign to re-brand April as Autism Acceptance Month.
We are setting up a website to help publicize events across the country and you can be a part of it. We want you to set up an Autism Acceptance Month event in your local community and let us know about it!
Check out our tip sheet on the ASAN website for ideas about local community events you can organize. Then let us know about it at email@example.com and we will work with you to help publicize your event and connect you to Autism Acceptance Month festivities. We will be working on this from now until the end of April, so don’t hesitate to contact us if there’s anything we can do to help you in your efforts. In addition, we want everyone to be involved – whether you are Autistic, family member, professional or an ally without any formal connection to the Autistic community. All are welcome.
All of us have a stake in making April about something real. At the end of the day, awareness is not enough. Together, we can do better. Will you join us?
As always, Nothing About Us, Without Us!
Autistic Self Advocacy Network