There are few parents in the Down syndrome community who connect communities. By that, I mean that they connect the parent-led Down syndrome community with another community – disability, feminist, LGTBQ, race and so forth.
The parents who are connecters are gold – they help us all understand more about communities that we may not be a part of personally. They broaden the world, help us all understand each other a little more.
Alison Piepmeier was such a person.
She connected the Down syndrome parent community with the feminist community. She also connected the Down syndrome parent community with the disability studies community, and as a staunch ally for the LGTBQ, disabled and black communities, she brought issues facing those communities and placed them under the majority’s radar. She cared about women, about justice, about human rights.
She cared about people, full stop.
Last year at the Society for Disability Studies conference, I met Alison for the first time.
She and I had been writing or texting each other for years. She was interviewing me for a book that she was writing, and we just got along really well.
When I saw Alison for the first time, I started crying (I’m just at that point in life now where I can turn into an emotional bag of leaky water in an instant. It’s embarrassing). She was totally cool and made it all feel like it wasn’t a big deal that I was a human faucet. We hung out some, and the next day, Katherine, Alison and I walked to the Disability Rights Museum on Wheels. The 3 of us talked and laughed and really enjoyed each other’s company.
We met with George, Fiona and Rachel for dinner – maybe it was kind of funny for us because Katherine and I couldn’t hear Rachel at all and I could tell Alison was struggling to connect Rachel’s quick words.
I had been a fan of Alison’s blog for years and followed her account of her life with the brain tumor closely.
She had written about how difficult it was for her to remember and to string words together. You could see it.
I felt close to her, as she had the expression that I know that Katherine and I often wear, one of struggling to understand. For us, it was a matter of hearing – for her, it was a matter of processing and remembering. But the results were very similar.
In the course of the next year, Alison’s brain tumor grew worse. To the point of there being nothing she could do about it, and she passed away this week.
The Down syndrome community has lost a great voice and Connector. The feminist and disabled communities have also lost a bright light. The LGTBQ and black communities have lost a staunch ally. A family has lost a daughter, sister, aunt. A man has lost his beloved. A child has lost her mother.
Alison Piepmeier: rest in power. May the force be with you.
You will be missed.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
Oh my god. I was so hoping that wasn’t going to be the case when I saw the beautiful pictures of you together. I’m so very sorry to hear this news. Thrilled that you were able to get together with such special people.
That was a great night, I knew about the tumour. I’m glad I met Alison, and enjoyed watching how excited you were to be with her. Rest in Power indeed Alison.