EntriesFavorite Writings by MelDeinstitutionalization and Community LivingAdd a Message
Mel Baggs, a blogger and activist who was one of the founding figures of the neurodiversity movement, died on April 11, 2020. Mel Baggs was a fierce champion for a simple yet powerful idea – that all people have rights and value, no matter what kind of support they need or how they communicate. Mel’s writing and short film “In My Language,” was a vital part of the growing self-advocacy movement.
Mel wrote that hir blog’s title, Ballastexistenz, came from “a historical term that means ‘ballast existence’ or ‘ballast life’, that was applied to disabled people in order to make us seem like useless eaters, lives unworthy of life. I knew when I started this blog that this was how many people perceived me, but I have since experienced levels of discrimination, particularly in the field of medical care, that would have killed me outright had I not had a strong disability community fighting for me.” In return, sie fought for the community and community itself.
Over the last few years, Mel documented hir struggles with a service system that would not meet hir independent living needs. ASAN was working with Mel on this issue. It is a massive systems failure that Mel’s needs went unmet in hir last years. Sie deserved so much better.
This virtual guestbook is your place to leave comments, photos, and other tributes to Mel Baggs. No need to only leave messages including words! Part of Mel’s language was in sounds and in images of hir favorite things – pictures of stones, redwood trees, cats, and more.
As sie wrote, “If you have ever existed, then some place in time, you always exist.” Let’s celebrate Mel’s existence as a real, vibrant, and valuable part of our community whose legacy is one of reminding everyone of their own value too.
If you would like to leave a file larger than the limit, such as a photo, or video, or can’t access the form, please email guestbook@autisticadvocacy.org.
Name | Message |
|---|---|
| Bobbi Elman | So missed ❤️ |
| Charlie GS | Mel changed my life. I read Loud Hands at 16 after getting my official Autism diagnosis, and "The Meaning of Self-Advocacy" made me realize that what I thought was me "acting out" or "behaving badly" was actually self-advocacy and communicating my needs to a world that refused to acknowledge my humanity. I'm devastated that the world refused to acknowledge Mel's humanity too, and that in the end this refusal took hir life. Much love to all of Mel's family, friends, and loved ones (chosen and/or biological), and sie will be (and already is) very much missed by hir wider community. |
| Branden | ❤️ |
| JJ | Mel's writings shaped my autistic identity. Sie expressed concepts I had never been able to put into words, and taught me things I had not realised I needed to learn. Sie was important and valued and will be missed. |
| Anne Corwin | Meeting Mel was unexpected but also wonderful, because one thing we both absolutely grew up with was the nagging sense that the world-at-large didn’t believe we were possible, and when we finally encountered each other, it was like this incredible validation of our mutual real-ness. Our respective combinations of strength/weakness weren’t supposed to coexist. We could do things we weren’t “supposed” to be able to do, and there were things we couldn’t do, or couldn’t do consistently, that seemed at odds with the outside world’s sense of the implications of our other abilities. We were both observant of the tiniest details, and yet, struggled with any sort of long-term organization of our stuff. We learned in the same way: in a manner that often scarcely resembled ‘learning’ to anyone watching, but which led to people being thorougly surprised to see what we’d apparently picked up on while looking for all the world like we weren’t paying attention. We both simultaneously struggled with words, and produced a lot of them, often in an effort to compensate for said struggle. Mel is not supposed to be dead. Mel was supposed to live to a wonderful old age. I always pictured Mel eventually moving into some sort of woodland hobbit-hole or something, among many trees and rocks and fungi and animals. Of course, there would be a cat. Possibly several cats. One of the last conversations I had with Mel was a few days before their death; we were discussing the pandemic situation, and in that context, Mel had commented, “I am accepting I might not live much longer”. This was, needless to say, a scary and heartbreaking thing to read, but at the same time, I think Mel was referring to something other than acquiescing to defeatism. Mel was making plans for the future right up until the end, living as if life would continue. I had been planning to make hir a ukulele; she was working on a crochet tapestry thing in honor of my dear departed cats, Nikki and Shadow, and wrote to me during this process: “The hardest thing about Nikki's grave is the clarity -- that utter crystal clarity -- I don't know how to convey that with crochet, and it's the thing I'd want to capture the most. I supposed I'd have to make everything and hope that came through in the combination of elements. It's like her grave is a window into somewhere very clear and she's part of what focuses it. She's become part of what focuses it, that seems to be what Tenth Life [a concept from Diane Duane’s cat wizard books that Mel and I both loved] is about. It's about... seemingly...willingly giving oneself up when dead, to something that turns you into something that's... more and less you than what you were, yet is basically a focus of the most intense and important parts of good. I'm not sure of any details but I think that's the basics. And I doubt there are or even should be words for most of it. But it's important.” May Mel’s memory be “a focus of the most intense and important parts of good”. I miss my friend. [photo: mel, a person with long wavy dark hair, glasses, a white shirt partially covered with a crocheted shawl, and a tan hat, sitting next to me, a person with dark teal hair with bangs, glasses, and a dark grey T shirt with purple planets on it.] |
| Angeline | When I was first learning about my autism it was really valuable to find Mel's blog and get some perspective on our community's history and self-advocacy. I am so grateful for Mel's work. |
| Jae aka @theamazinJ | Mel was amazing teacher especially since I met them at the Autism-Hub blogging group in 2007. I loved their/sier video In My Language and it inspired me in so many ways. I will miss Mel so much and I hope their work will be a legacy everyone allistic and disabled alike will be read finally (not just by some, but all, and not just read, but implemented!) Thank you, Mel!!! A blog post about Mel: https://drivemomcrazy.com/2020/contributions-mel-baggs-made-for-self-advocacy-movement-that-helped-me/ |
| Jess Hughes | Mel Baggs changed my life, changed how I understand communication and disability. I so regret never reaching out to hir and telling hir that. |
| Jonathan Kratchman | When I was coming to terms with being autistic, I learned about Mel. Zir work has taught me to be proud of who I am and to feel more confident about myself. We certainly will miss you greatly Mel |
| Cathy Prendergast | I still show In My Language to my class every time I teach Disability and Film. You have opened up so many eyes forever, in an uncompromising way. |
| Amy | What a tremendous gift Mel was to the world! I found hir blog over a decade ago when my son was a child, and I was struggling to understand what autism meant. Mel taught me so much about how to parent my son and be his ally in a world that has often been hostile to him. I will forever be grateful for the part sie played in the young man he has become. |
| Michael | I had never met Mel or talked to hir online but I have never felt safer then when I read hir writing. I am mentally ill in a really visible way, I talk to myself and pull my hairs out and pace in circles in public. To other people I seem to laugh and cry and yell at nothing for no reason. But when Mel made the video "In My Language" sie talked about how sie has been seen as non responsive for interacting with the "wrong" things, and is only viewed as intelligent when sie responds to a more limited number of things. I had never seen anyone put that experience into words. I am only treated like a person when I make my behavior and emotions and speech smaller and more limited. I have only met two people in real life who respect me when I am being fully myself, but I know if I had ever met Mel sie would have seen me as fully human. All of Mel's work is about how everyone is a real person, even people who don't talk or who seem to "talk to no one". Mel believed that no one deserved to be hurt, or locked up, or treated like what sie called an unperson. I didn't know that I could be real until I read hir work. I didn't know that I didn't deserve to be hurt. I thought I needed to change every part of myself and now I know that isn't true. I have the right to exist as I am. So did Mel. Even though I haven't talked to many people online or in real life about disability because it isn't safe for me, I know that Mel has changed people's lives like sie changed mine. I wonder how many more things Mel could have done if medicine hadn't failed hir. I'll miss seeing the pictures of hir cats and garden, of trees and plants and rocks that spoke to hir. Mel lived and was real. People tried to treat hir like sie wasn't real but they were wrong. Everyone deserves to live and be free, that's the most important thing Mel taught me. [Pictured: Seven smooth, round, symmetrical rocks that I think Mel would have liked. Five are grey, one is pale brown and one is a dark red brown. They are sitting on a soft, light pink blanket. I collected them from a rocky beach on a cold day. The strong waves beat against all the rocks on the shore until they were perfectly smooth and round.] |
| Cheyenne @ChiariChey | I never got a chance to interact with Mel, but sie is one of the people who led me to discovering the autistic community. Back when I was too afraid to speak up, hir work kept me coming back. I learned so much about myself and the things I'd struggled to explain. You are missed Mel 💜 |
| Anna (Mom) | Mel left us her words, film, art, and many memories. I am very touched by the words and pictures left here by each of you. She told me never to worry about pronouns when writing about her so mine are not re-aligned to new cultural norms. I want to thank Mel here for teaching me more then I have learned from anyone ever including about love, acceptance and forgiveness. I was compelled to move our nuclear family to Redwood Terrace miles west of La Honda, Ca. months before Mel's birth. Mel slept in a crib with the warmth of a cat, vibrating with the rhythm of purring, the sound of owl hoots floating on the night air in the backwoods. She spoke cat before people talk. The lessons of the redwoods and their beauty imprinted on her soul giving her peace and solace throughout life in sometimes less tranquil environments. She told me on my retirement, "You need a cat!" and I still have the one she picked out for me in 2003. If I am successful I will attach one of Mel's paintings of cats with cat emotions pressed into the color with her fingers. Mel's abilities and senses were constantly in flux. At times she was able to hike, climb trees and boulders, ski, swim, ride horseback. She read books loving astronomy, philosophy and religions. She had a keen sense of justice and questioned any prejudice she saw from kindergarten forward. Mel's long time companion cat Fey she had for many years and Fey was considered a service cat. Mel had a rare movement disorder connected to Autism called Autistic Catatonia. Mel had difficulty initiating activities including including ones needed for preparing breathing txs, brushing teeth and this included initiating friendships.This also included difficulty with actual movement. She could get stuck in a room unable to go forward or backward, and Fey considered Mel at times like this to be as Mel put it, a large stupid kitten! Fey would push on Mel's heels until she got unstuck and could move again. Fey also sensed seizures. Mel endured bullying, death threats, and gave up the comfort of anonymity to push her strongly held beliefs for the inclusion of all personhoods in society no matter their disability, communication style, or gender identification.. She had a fierce independence and purpose early in life that propelled her despite challenging health considerations. She found solutions for anything hat blocked her way. Mel finally found community as an adult in the disability community, ASAN being the closest to her heart. Laura, so instrumental at many times in Mel's life is family we call 2nd Mom and her twin-like friend Anne became like a sister. There are more of you too she considered family. Unfortunately due to health and distance I have missed knowing many of you. Mel had plans to grow old. She had plans to return to the redwoods. She had much more to write...to paint...to crochet...She had symphonies fully written inside of her she could not figure how to get out. She got to hear them every day. I hoped one day the media lab at MIT might help her with this. She left us too soon.... I want Mel to know we will work against the injustice in medical care that results in 3rd world medicine for the disabled and in service organizations changing rules to abandon those who seem too complicated to deal with. Mel would say they lack imagination....I say they also lack ethics and heart not to mention more laws and oversight.. Mel managed to create with collaboration a support system that was personalized to her needs that worked well for 2005-2016. That was huge and can be a model. What went wrong next requires new laws, more oversight, and inclusion of the disabled on boards to prevent this from happening to others. I want Mel to know that Laura and Anne and I are supporting one another and are committed to making sure your work remains accessible. In my Language was recently shown in Japan and translated with Japanese and is now on youtube. Your poetry, novel, and art will be accessible in time. Mel you are so missed......I see you everywhere....eternal love, Mom Thanks to ASAN and friends for all their care and support |
| Donnie | I remember watching In My Language. I remember feeling so much less alone. I remember watching Mel rub hir face into something soft and thinking of all the times I rubbed my face into something, seeking sensory input. I remember reading in Mel’s obituary that they attended my local community college. I drive past that college semi-frequently. I think about Mel every time I pass it. What I learned the most from Mel is that self-advocacy does not have to look a certain way. Self-advocacy is a human right. Self-determination is a human right. And nobody is too disabled for rights. Nobody is too disabled to be human. Rights are not predicated on independence. We are all interdependent. We all deserve rights. And here is a poem I wrote for Mel, to Mel: when I found out you died•I locked myself in the bathroom•and sobbed•collapsed against the toilet•head and hands buried in the rough old teal blue hand towel•remembering the first time I heard your voice•remembering feeling not so alone•they say that what is remembered lives•and you deserved to live forever•a thousand beautiful thank yous•a thousand thousand apologies•and a balance between the infinite sorrow and fury of losing you•and the joy of knowing you will live forever•with every person who found themselves in your words |
| Sebastian | Mel’s writing has certainly enlightened me. I wish I had discovered Mel sooner, as it’s some of the most impactful work I’ve seen by an autistic person. You will be missed by us all |
| Michelle Skigen | I had the privilege of getting to know Mel initially through Facebook, and then through hir blogs and videos. I was greatly saddened to hear of hir death. Hir voice was one of courage, conviction, and love. |
| Nicole Corrado | So sorry to hear of your death! You were a wonderful advocate in the spelling autistic community. God bless your soul. |
Some of our favorite works by Mel include:
Up in the Clouds and Down in the Valley: My Richness and Yours
You can find more of hir work here:
Mel’s Cussin’ and Discussin’ Blog
One of the issues Mel was most passionate about was deinstitutionalization. As an institution survivor, sie was a participant at the community living summit ASAN hosted in May of 2018. At the summit, autistic people talked about what living in the community means to us, and how we can help more people live in the community. We made a fact sheet about what was talked about at the summit. You can find it here. We put together a lot of resources at this summit, which you can find here.
Mel wrote a lot about what makes a place an institution, how people make new institutions that perpetuate the same abuses, and the importance of a self-determined life for all people with disabilities. Here are just a few of hir articles on institutions and housing:
We need to move further away from traditional institutionalization, not back towards it.
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