Category Archives: abolishing medical and charity models of thinking

thoughts on the politics of independence

“the community is not great for anyone until it is great for everyone.”        –WIDU motto
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Filed under ableism, abolishing medical and charity models of thinking, API-A, community, disability, i love my people, race, woc

thoughts on alex barton and the way we organize

Recently, a young boy by the name of Alex Barton participated in an experiment on democracy.

Sounds harmless, right?

Way off. Wendy Portillo, Alex’s teacher, allowed his classmates to go around and tell him all the things they did not like about him. After the class told him he was “disgusting” and “annoying”, the teacher allowed them to vote him out of the class. After a 14 to 2 vote, he spent the day inside the nurse’s office.

Alex is five years old and in kindergarten. He is currently going through a process to see if he has Aspergers syndrome, a disability on the autism spectrum. Since being kicked out of his classroom, Alex’s personality has changed, he says he feels “sad,” and he is seen telling himself over and over “I’m not special, I’m not special.” Florida authorities have said that effects do not meet the standards for emotional child abuse.

At the end of this entry are ways you can tell Florida schools you think all people have the right to an education and to be treated with respect.

One aspect that really bothers me about this case is our strategy for addressing ableism (or not addressing it). There has been a HUGE outcry from the autistic rights community. Although I have not even begun to dip into all of the blog posts written on this case— it’s now estimated that 50 people have already blogged about this!—I am surprised at the way we as a community and as individuals frame this issue. Much of the outrage has come in the form of the golden rule (do unto others as you would have them do unto you, or, so they’ll do unto you when the tables are turned), which Lastcrazyhorn writes about. We’ve all talked about how NO ONE—aspie or not— should have to go through this trauma. Though this is all very, very obviously true, I’m left wondering why we can’t name what happened ableist. Instead we have to say that no one deserves this treatment, you wouldn’t want this, we’re contributors, and give other explanations. It’s like the word ableism has no power. Continue reading


Filed under ableism, abolishing medical and charity models of thinking, activism, community, disability

Here They Come!: the 37th edition of the Disability Blog Carnival

The words carnival and disability together brings many images to mind. Images of freakshows, disability being manipulated, and all kinds of hard times for disabled people are thought of. Here we are though, in 2008, reclaiming and recycling these words together to mean something new. This disability blog carnival, the 37th one of its kind, focuses on the celebration of disability culture, struggle, people, history and identity. Put your party hats on— we’re ready to get started!

“I think it was perhaps the most important thing that happened to me. It formed me, guided me, instructed me, helped me, humiliated me, all those things at once. I’ve never gotten over it, and I am aware of the force and power of it.”
—Dorethea Lange on disability

ThinkFreestyle tells us why disability culture is important to her as a disabled Latina while honoring a friend who traveled alongside her in her journey to community. Solitaire Miles shares with us both a beautiful self-portrait and her difficult experience as a disabled person in the entertainment industry. Wheelchair Dancer writes beautifully about how identity is part practice, part culture while Big Noise taps into collective power through pride. Astrid dissects disability culture and asks whether people can rightfully have a disability identity when being excluded from the disability community.
Bladyblog bravely ponders his disability identity and talks about living on the margins of queer and disability identity groups. Fibrofog does a wonderful job also on this topic and talks about how we can not have a single-issue system of justice and expect change.

Baraka describes her disability as a second husband, someone who takes energy from her, while Wheelie Catholic tells us what she doesn’t miss about her pre-quad body. Paula and Tokah both talk about how disability identity sometimes clashes with the other parts of them (and both come up with really cool terms—Paula “cripeleptic” and Tokah “the chippy martyr”). Kay at The Gimp Parade writes about the complicated all-encompassing [inclusive] nature of the disability community. Ettina talks about disability identity as the differences between you and nondisabled people, not labels. Ettina also covers intellectual and developmental disability stereotypes and how her life fits into them. Estee, at the Joy of Autism blog, also talks about difference and how it is not a deficiency [something lacking]. Shiloh also writes about disability being a part of her and even includes an acrostic poem!

Cheryl tells us what life is like when society tells you are lacking in culture or community and makes her own definitions of disability (hint: creativity! Being resourceful!). Terri tells us what she wants— pride, respect, group accountability for ableism, and acceptance. (Check out her list for more.) Mik Danger, one of my favorite bloggers, tells us why people should ally with the disability community and how movements feed each other. Dark Angel radically defies stereotypes with her beautiful queer, blind, pagan, goth self. Matt speculates why people with disabilities are often excluded from houses of worship. Shiva and Trinity and both talk about the politics of passing [hiding your identity] in a very personal way. Trin says “I wasn’t passing. I was telling myself I passed because I couldn’t stomach the idea that maybe I didn’t, that maybe my disability was something that really did affect how people saw me and thought of me and interacted with me.” Shiva says: ”The problem with “passing” and “stealth”, when it comes to liberation movements, is that it’s essentially an individualistic way of seeking one’s own safety, freedom or place in society by moving out of an oppressed or marginalized group, which inevitably compromises one’s ability to fight for the rights of that whole group”.

Pitt Rehab tells us that, with his spinal cord injury, some days he does not feel disabled while other days his life screams disability. Lauredhel tells us how disability impacts day-to-day routines, like going to the doctor. After some seizures and TIAs, Elizabeth McClung writes in with an emotionally raw post and a letter to herself reminding her who she is. Annaham shares with us a self-portrait where she has needles poking every part of her body but still has her fist raised. David shares his painful experience of hearing a disability slur in a safe space. Perennial Sam shares her first blog post ever with us, one that describes the nature of her mental health disability. Yanub, author of Yet Another Never Updated blog (lol), also writes about the nature of her disability and her journey with it. Amandaw tells us of the way she reluctantly [slowly, unsurely] uses the word “Disabled” and her reasons for it. gives us a Hymes asks us a series of questions around how she is treated as a person with a psychiatric disability.

Elizabeth explains why it isn’t autism that she wants cured but rather neurotypicality [the idea that everyone has to think, behave, and communicate in the same way]. Pocochina writes about her struggle with accepting disability and figuring out if she is a part of the community. Zan at Butterfly Cauldron writes about the need for grieving over the changes in one’s body and life because of disability. Verlidaine talks about the “why you” stare when she calls out ableism. Athena and Ivan talk about the ups and downs of disability or autistic pride and the need to sometimes be guarded about disclosing [letting people know] their disability.

Three new websites were shared with us during this carnival: Endeavor Freedom, a networking site for disability activists and everyday people, Feminist Mental Health UK, a group blog focused on mental health issues, and Hows Your News, a fun media site about a group of disabled people making their mark on pop culture!

Julia also shared a fierce poem inspired by Frida Kahlo. Though I was not able to access it because I don’t have an Endeavor Freedom password (yet!), it is Comment #33 on this thread.

Whew! Quite a carnival! If you haven’t had time to post yet, feel free to keep sending your posts this way and add to the dialogue!

A special thank-you goes to Penny who, from my 5 second internet research, has been working on the carnival since September 2006. Many props and thanks also go to the 40 bloggers who put a lot of thought into their posts and submitted them and/or were found out (grin) by Penny at the Disability Studies Temple Univ. blog.

The next blog carnival will be at Ryn Tales on the 22nd so be sure to visit over there and find out more.

Again, please feel free to keep submitting!


Filed under ableism, abolishing medical and charity models of thinking, community, disability, i love my people, identity, internal change, intersections, links, Uncategorized, writing/poetry

i believe this what is known as pissing on pity?

This is something I have been writing for school. It’s still in the works but I wanted to post after a conversation I had with two friends about March being the time when all the Jerry Lewis MDA-telethon lovers come out to play (and ask you to donate money for our wretched souls.)


You’re so courageous. Brave. An inspiration. God bless you.
Can I buy you an ice cream cone?
Carry your bag [even though you show no sign of being ready to move?]

This is in the Atlanta airport. I am traveling to Memphis so that I can meet friends, hopefully write some poetry, and go to the Civil Rights Museum if everyone’s up to it. I am traveling with my personal care attendant [PCA], Em, and when she goes to check out some shops, I pick up my book and try to relax until the delayed flight finally arrives.

Except that I can’t relax—privacy is a privilege I don’t have. My body is different. My spine twists and turns in ways unimaginable to the everyday airport passerby. I breathe and talk differently. It’s understandable that people are curious but when people are constantly pulling over to where I’m sitting and telling me things like they can’t imagine living like I do, that I’m an “inspiration”, it’s no longer a mere curiosity about my body. It’s a strong statement on what disability means in this society. It’s the lens in which people view those who are physically “otherized.” It’s the Ashley X treatment and disabled women being sterilized and stunted to convenience [make things easier] their poor caregivers. It’s the high unemployment rate (sometimes estimated at 70%) for disabled people because Jerry Lewis tells them we’re charity cases, not contributors. And it does not matter if I am on vacation visiting loved ones, traveling to speak at a disability rights conference, or working on Capitol Hill, they will still refuse to believe that I wanted to get out of bed in the morning. To them, I am nothing but a modern Tiny Tim whose head seems to need some urgent head-patting.

I could go into my speech about how in the words of St. Augustine, charity is no substitute for justice withheld. I could tell them that I love this disabled body they deem freakish or that I wouldn’t trade the community I share with people who speak, think, visualize or move differently for anything in the world (this is the same bond that Dr. Carol Gill defines as the familiar, comfortable rhythm of shared meanings that Disabled people, even strangers, fall into when they meet.) I could tell them that I’m just like everyone else.

Just. Like. Everyone. Else. Except that particular statement never works. When people hear disabled people say that, they assume that we want to be able-bodied or that we want to somehow separate ourselves from disability. I am proud to be who I am and am not sure how this is message is confused with the wish to be treated equally, or just like everyone else. You will not hear me claim that disability does not define me, in fact, it is an integral part of who I am. Is identity not inherently connected to one’s experiences or how one is perceived?

This is not to say life is not a struggle when one does not fit into dominant culture. My life is one of resisting assimilation [being absorbed into another culture]and struggling to find pride in who I am. Assimilation comes in many forms. Sometimes it is subtle, like temporarily wishing I could take off the disabled/queer/Corean hat and just be a college student. Sometimes it’s more explicit, like the year I spent immersed in only country music and cowboy boots or whenever I choose advocacy over activism because I am buying into the messages that says it is the only way to do something.

Mia Mingus, a fellow queer disabled APIA activist, says that multi-issue politics are not just a winning strategy but indeed the only way that we will survive. Pat Parker, a black lesbian feminist writer, said that the day that all the different parts of her can come along, we would have what she would call a revolution. There is truth in the words of these two women and as I continue to shed preconceived ideas of what it means to be me, I will continue to seek this truth.

And until we meet again, beware of wishing a Chicken-Soup-For-the-Soulish God Bless you on any uppity cripples you run across in an airport.


Filed under ableism, abolishing medical and charity models of thinking, crip culture, telethon, writing/poetry


Via the Autistic Self Advocacy Network:

Hello everyone,

I am pleased to inform you that this afternoon the NYU Child Study Center announced that they will be ending the “Ransom Notes” ad campaign in response to widespread public pressure from the disability community. You can read that announcement here. The thousands of people with disabilities, family members, professionals and others who have written, called, e-mailed and signed our petition have been heard. Today is a historic day for the disability community. Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the NYU Child Study Center, I have obtained a commitment to pursue real dialogue in the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the “Ransom Notes” ad campaign. Continue reading


Filed under abolishing medical and charity models of thinking


take it out! throw it away!
steal it if you have to…
don’t you know this is what she wants?
(because i can read her mind)
that girl in america
ashley was her name
doesn’t our little katie deserve the same?
cause she’ll never be a woman
she’ll never need a period
isn’t that’s all women are anyways,
sweet motherly baby-making machines?
we do this to her because we love her
we want to keep her close
what happens when she gets older
tell me, where will she go?
you raise a good point, mother
that is a true concern
but is that all she is– an appliance that doesn’t work any more?
the issue is with society who would rather institutionalize katie
or force people to provide free care until she winds up mutilated, abused, murdered…
with adequate supports, katie could be free
instead you condemn disabled people
making us the burden, the enemy,
i think you folks do this to take your mind off of things like ableism, sexism, racism, classism,
the fact that this wouldn’t be an issue if she was a boy,
and the reality that women still don’t have ownership over their body
katie is not the problem.
i’m not the problem.
could it be you?

it’s so frusterating to read “big” FEMINIST blogs and see them casually complating whether disabled women should have rights to their body…. isn’t this a basic element of feminism?? how can you discuss the value of our life so passively? why isn’t the Katie case making your blood boil? it’s been a really long process for me to identify as a Feminist and it’s because of shit like this.


Filed under ableism, abolishing medical and charity models of thinking, disability, writing/poetry

from a place of love

CHECK OUT THE BLOGSWARM OVER AT KARA’S!!!!!!(not too late to join, just email your link to

I didn’t think I was going to blog about the telethon, only because I’ve been up to my eyebrows in telethon-related organizing and with the campaign being posted tonight at midnight, I thought my position it was clear.

I have Muscular Dystrophy, but like NO explains on Think Freestyle I believe disability is a cultural identity and don’t feel the need to label myself with a medical diagnosis. Muscular dystrophy/congenital myopathy/or whatever the doctors are arguing “it” is, these aren’t words I use to describe myself, rather they belong to my doctors and the medical establisment [field or structure]. 

I’ve been reading Accidents by Nature, a book for younger teens written by Harriet Mcbryde Johnson, a woman who has been protesting the telethon for 17 years. The main character is one many disabled people can identify with as she grew up mainstreamed and separated herself from disability because society taught her that it was disabling unless she “rose above” when actually disability is just a natural, beautiful, complex part of the human experience. I don’t know if it’s because the book is set in NC and I recognize all the names, but it’s like I’m reading my own story. I haven’t reached the end of the book yet but I believe she will understand she is like the other disabled kids and learn to be proud of that, rather than trying to deny, hate, heal, erase, or “overcome” her disability.

I remember the moment I learned I even had a community. Continue reading


Filed under abolishing medical and charity models of thinking, community, crip culture, disability, telethon