The Disability Rights Movement is an integral part of US American history. This post is a very, VERY short summary of what it was/is, with the best videos out there on it, and some suggested resources for more information.
Read more and investigate the links at the end of the post!
The Disability Rights Movement
The Disability Rights Movement is a global movement for equal opportunities and rights for people across the disability spectrum.
It includes access and safety in physical environments, buildings and transportation; “equal opportunities in independent living, employment equity, education, and housing; and freedom from discrimination, abuse, neglect, and other violations.” (wikipedia)
The Disability Rights Movement started in the 1960’s in the United States; encouraged by the civil rights movement. Through nonviolent protests, sit-in’s and “silent armies” that worked behind the scenes, Americans with Disabilities Act (ADA) and Individuals with Disabilities Education Act were created, then Section 504 of the ADA was enacted.
Section 504 of the 1973 Rehabilitation Act was the first disability civil rights law to be enacted in the United States. It prohibits discrimination against people with disabilities in programs that receive federal financial assistance, and set the stage for enactment of the Americans with Disabilities Act. Section 504 works together with the ADA and IDEA to protect children and adults with disabilities from exclusion, and unequal treatment in schools, jobs and the community. – DREDF
Section 504 essentially gives teeth the ADA. It was won through protest, and these videos below are wonderful tools in understanding both how important Section 504 is for people with disabilities, and how hard-won it was.
The videos speak to the power and resourcefulness of the disability community:
The Power of the 504, Part 1
The Power of the 504, Part 2
The Independent Living Movement
The Independent Living Movement also came out of California in the 1960’s. It was led by a group of students from UC Berkeley, “The Rolling Quads,” of whom Ed Roberts was a leader. This movements speaks to the fact that people with disabilities know their own needs best, “and therefore they must take the initiative, individually and collectively, in designing and promoting better solutions and must organize themselves for political power. Besides de-professionalization and self-representation, the independent living movement’s ideology comprises de-medicalization of disability, de-institutionalization”; it is cross-disability, that is, it goes across the disability spectrum. (wikipedia)
Many organizations which are fundamental to the ongoing Disability Rights Movement begin with the Independent Living Movement – Center for Independent Living being chief, and giving birth to the World Institute on Disability. Today, many of these organizations are found in the Ed Roberts Campus in Berkeley, California, a stunning center dedicated to disability rights and universal access.
This post is about the politically correct term for disabled and politically correct term for special needs. It’s for everyone out there like my friend who asked me to write this post because she was just confused by all the talk out there about what to call us!
So here we go.
The Trajectory of the Disabled
I’ve been a person with a disability for most of my life, and a member of the Down syndrome community (thanks to my daughter!) for 8 years. In between my life lived with disabilities and being a parent of a child with a disability, I’ve seen an awful lot of upset over words that are directed towards the disability community, however inadvertently. I myself have been one of those that have been upset.
It happens something like this with the Down syndrome community:
Someone famous says something offensive (- usually involving the word, “retard”)
The Down syndrome community bellows
The famous person or situation or whatever apologizes
The Down syndrome community simmers down.
The Greater Disability Community:
With the greater (cross-disability) community, it’s more of a matter of never ending-ness. It’s the constant little pin-pricks of the “handi-capable”, “special needs”, the references to “wheelchair bound”, and the “differently-abled.”
Everyone is pretty sick of it. The Down syndrome community is sick of it, the greater (cross-disability) disability is sick of it, and there we go.
What is the Politically Correct Term for Disabled People?
I know – just like most of you do as well – that there is a certain amount of weariness felt by members outside of our community.
That is, people outside of our community who care about us and our kids, people who want to be our friends and allies, people who want to do and say the right thing.
And the weariness easily switches to wariness.
Like, nervousness about saying something offensive.
When is a word okay? How is a world okay? If the word is okay with YOU, will it be okay with THEM? Is that person over there going to jump on me?
But wait – YOU said it was okay, YOU say that yourself -? Arrrrrghhhh!
I completely get it and I don’t think there are easy answers because I think so much of this depends on individual preference. There are no universal agreed-upon guidelines. That makes it tricky, you know, for allies to the disabled/Down syndrome parent community.
They say “people with disabilities” and you say “disabled.”
But that girl using a wheelchair says “gimp” or “crip”.
You are not a “person with deafness”, you are a “deaf person” but Moxie is not a “Down syndrome child”; she’s a “person with Down syndrome.”
It’s person first language…until it’s identify-first.
That is, it’s person-first language – a person with a disability – until the person sees disability as an identity, then it becomes identify first.
Identify-first is: deaf person, blind person, disabled person.
Then you get the really fun stuff: Archaic Words!
Those are words that have evolved but still carry some of their original meaning.
Moron, idiot, cretin, mongo all fall under that – as well as retard. So, what do you do? Do you say none of the words? What if you want to use the actual meaning of the word in a correct context, like “retard growth”?
What if you forget?
What if you never knew?
What if you SUCK and just MESS UP and someone catches you and you are proved to be a COMPLETELY INSENSITIVE and HURTFUL HUMAN BEING?!!!!!!
Oh, you monster.
No easy answers. I don’t know what to say, really, because I know if I tell you something, someone else will be telling you something different.
And then the person over in that group over there is going to tell you it’s all balderdash anyway
So, what IS the politically correct term for the disabled? “Special Needs”?
No. Don’t call us “special needs.” Our needs are not “special”, they are human. With that in mind, some basic guidelines for politically correct and the disabled:
“Special needs” WAS an educational term, not a disability term. Now, it’s just a term that you should be staying way the hell away from (see this post)
“Disability” is a particular way of seeing, hearing, feeling, thinking, moving, learning, sensing, being. It’s not negative. It’s a way of experiencing the world.
Nothing about “disability” indicates “ability” (see this post)
Saying ‘disabled’ is fine; ‘person with a disability’ is fine too, but see how the person wants to be referred to as. Roll with their example.
This post is about why your use of the word “retarded” actually makes you look stupid.
This is not a post about being politically correct and if you say anything about “being pc” I will reach through the computer and sprinkle legos all over your floor in the middle of the night, so don’t say I didn’t warn you.
I was humming along my Facebook feed when I came upon what started off as a really funny post about texting messages with a tattoo artist. It started off as funny, but then got old real fast when they slid down the slope of saying “are you retarded?” when the person was being completely dense and stupid, and I was left shaking my head with my face in my palm. I wasn’t angry or anything, just blown away that someone is still equating “retarded” with “stupid”.
So I’m writing a short post about why you should quit saying it, and I’m going to list them because not only do I love lists, but it’s proven that listicles do better as blog posts, and as a blogger, I’d like to see this actually read.
“Retarded” Does NOT Equal “Stupid”
First of all, if you are saying the word “retarded” the way you think you want to be using it – as a pejorative to someone’s intelligence, you are wrong. “Retarded” as it used to relate to someone intelligence means “delayed.” It never meant stupid. It only meant delayed.
But that’s not even used any more.
No-one even uses it anymore, because we’ve gone beyond all that (except for some stragglers apparently). So your use of an outdated word, and your incorrect use of an outdated word to boot, makes you just look…kind of stupid.
2. Learning Disabilities or Developmental Disabilities Do Not Equal Stupid Either
Learning disabilities do not equal stupid. Developmental disabilities do not equal stupid either. Good grief, I wish I had a dollar bill for every time someone said something like, “she doesn’t have a learning disability; she’s not stupid!” or “wow! your child [with the developmental disability] is actually pretty smart..”
I can’t believe we are having this conversation, or that anyone still says or thinks that a correlation between learning disabilities, developmental disabilities and stupidity exist.
I mean, we’ve watched all the movies. Forrest Gump comes immediately to mind, but there are a ton of movies (linked here) about disability. The common theme in them all is that of someone being misunderstood (and usually thought of as stupid) by dint of their disability, then the world is proven dead-wrong by the person with the disability. Amiright? I mean, this is a THING; this is a trope, a norm – it’s all over the place with eye-rolling amounts of regularity.
And I say “eye rolling” because:
a) it’s annoying to me when we with disabilities are just not allowed to fail in movies, or we are not allowed to just be people, flaws and all. We have to be the supercrips (or super-whatever) and inspire the non-disabled.
b) it’s obvious that the trope – even used as often as it is, for whatever reason it is – is a fail for disability acceptance because people are still equating learning disabilities and developmental disabilities with stupidity!!
3. Quit Saying “Retarded” At All!
Like I said already, most of us have moved on from saying “retarded” for any reason at all anymore. Have you heard of “Spread the Word to End the Word“? There is a whole organization dedicated to getting the “r-word” off the radar once and for all. This is directly because people with developmental disabilities – who have historically been called “retarded” have asked everyone else to.
They’ve asked. We need to respond and hold up our end and find better words to use, words that actually mean what they say and say what they mean.
We all love free stuff, but sometimes when you are raising a kid with a disability or special need, you REALLY love free stuff – or more accurately, you really NEED the free stuff, because disability or special needs can be expensive. Here’s a short list of some great free stuff for kids with disabilities or special needs*, focusing on products, services and money.
Ruby’s Rainbow: Scholarships for people with Intellectual Disabilities to attend higher education.
Financial planning is incredibly important for families in which disability is present. Neglecting this might mean that your child will be left destitute or institutionalized upon your passing. Here are some free resources to help you plan:
The Red Book: on the heels of understanding ABLE accounts is “The Red Book” – Social Security’s annual book on benefits. The link provided is to a pdf of the book.
Disability Benefits 101: tools and information on employment, health coverage, and benefits. Not all states are set up with the calculator, but World Institute on Disability has a lot of other information on financial planning and benefits – check out their books and resources here.
National Park Service: free lifetime pass to US national parks and more. There are some requirements and stipulations, so read through the application – which is linked here.
State Park Service: state parks have a disability discount – look up your state for more information and for the application. California’s is linked here.
Disney Disability Pass: this is changing as a result of the abuse, but it still helps families with a child with a disability or adults with disabilities. Check it out.
Bikes, Wheelchairs, Adaptive Equipment and more: Variety’s “Freedom Program” funds a lot. Check out the program here. Apply for help here.
Bikes, iPads & More: Gifts from the Heart for Down’s funds pretty much anything for kids with Down syndrome. Their application list is full as of 12/16; bookmark it if it’s relevant to you, and check back later.
iPads:Danny’s Wish awards iPads to kids with Autism. Applications are open from Sept-December 31st every year; iPads given out in April.
iPad Loans: Center for Accessible Technology has an iPad loan program, whereby you can try out an iPad and apps to see if it’s a fit. They will also work with you to see what will be helpful for your child.
Foundations & Grants
Foundations and Grants are a fabulous way to go. Finding the right fit can take a little research, but it’s well worth it. Here are some tips to get you started:
Check in with the local disability-specific organization that your child matches (- for us it was the Down syndrome Connection of the Bay Area). Ask for information they might have about grants, foundations, etc that will help cover costs of bikes, iPads, etc. Apply that way.
Google locally, “location-name + disability + grants foundations” – keep playing with the key words.
Look into the Foundation Center: they have information on foundations all across the world (not just the United States).
Some Foundations to Put on Your Radar:
Danielle’s Foundation: helping kids with Cerebral Palsy and brain injury gain access to therapies, equipment and other benefits.
Lindsay Foundation: comprehensive help for kids across the disability spectrum (from therapy to equipment and much, much more)
First Hand Foundation: worldwide. Help in all areas of the disability spectrum, providing assistance to getting a hearing aid or wheelchair to transport to and from therapy.
ACT Today! : Helping families who have a child on the Autism Spectrum with care and treatment.
“Special Needs” do not equal disability. These words should not be used interchangeably. Some people may have a disability but no special needs; others may have special needs but no disability. “Special Needs” is an education term; “disability” is a physical/cultural term.
Thanks to everyone on Facebook who helped me out with this list – especially the incomparable Amy Allison!
Please add links to places that you’ve found to be helpful or know about in the comments so that everyone can benefit. Thanks!
I’ve got to admit that when I joined the “special needs” community 8 years ago by way of giving birth to my daughter with Down syndrome, I was confused with all the “special needs” this and that. “Disability“, I was and am completely used to, both as a person with disabilities and as a professional working in the field of disability, I was used to “disability”.
But “special needs”? I wasn’t sure about it all, it really didn’t seem to make sense.
It seemed to me that the words were being used fairly interchangeably, but that most parents of kids with non-visible disabilities like Autism or with intellectual disabilities like Down syndrome, preferred the term “special needs” and used it way more than they’d use “disabled” (- if “disabled” was even used at all).
So what do they both mean anyway?
1. crippled; injured; incapacitated.
2. (used with a plural verb) persons who are crippled, injured, or incapacitated
I’m disabled – but I’m not, as dictionary.com puts it, “crippled, injured; incapacitated.”
No, in fact, I think I’m quite highly able and in full capacity of my own self.
So what do we have here? To me, we have a pretty inaccurate descriptive word that doesn’t mean a lot. It’s a word that harkens to the “medical model” of disability; that is, ” a sociopolitical model by which illness or disability, being the result of a physical condition intrinsic to the individual (it is part of that individual’s own body), may reduce the individual’s quality of life, and cause clear disadvantages to the individual.” (- see wikipedia).
It’s saying that because I can’t hear without hearing aids, because I can’t see without glasses, because I can’t mentally function without drugs or care and because my brain switches off when under stress, I’m “crippled, injured; incapacitated.”
And that would be a definition of “disabled”, of “disability”.
What then is are “special needs”? Are they any different from typical needs, or from the definition of disability/disabled?
According to dictionary.com, “special needs” are:
The special educational requirements of those with learning difficulties, emotional or behavioral problems, or physical disabilities.
So it appears that they are educational requirements.
“Special needs” is about education “disability” is about your body, your brain, your senses being wired and tapped in a unique way.
I have a hunch that it’s more than this, of course, as used by parents of kids with disabilities.
“Special needs” has a softer sound to it. Like, “my kid is NORMAL; s/he just has some needs that are singular, uncommon!” “Special needs” doesn’t sound quite as stigmatized as “disabled” does; doesn’t sound as… oh, “wheelchair bound” or “crippled“.
It’s just kind of like, ‘little Johnny is remarkable’ and not so much ‘little Johnny has constant seizures.”
I think a big problem in all of this is the cloak of doom n’ gloom that surrounds the word “disability”. We – as a society – seem to dislike the word “disability”. We just don’t dig it.
But we don’t have an actual word to replace it that works.
So people within the disabled community have gone about reclaiming the word “disabled”, taking it within the tribal sort of context, placing the social model of disability on it, and giving the medical model the bird. Cool, that works, we can do this.
Only, by keeping “special needs” on the mainstream market, by using “special needs” interchangeably with “disability”, we are weakening both, losing the value and meaning of both.
The words are not interchangeable.
Many kids without disabilities are on the special needs track in school; many people with special needs do not have a disability. Many people with a disability do not have special needs.
“disability” DOES NOT EQUAL “special needs”
And – while we are talking about it – “special needs” is just as inaccurate term as “disability” is – because who on earth does not have special needs? WE ALL DO. The word is, in and of itself, just flat out misleading, grouping together people in an educational setting and saying, “these kids need to be taught differently than everyone else” – but as a former teacher, I can tell you with conviction that EVERYONE needs to be taught differently than EVERYONE else! We all learn in unique ways; we all have needs that are special unto ourselves!
“Disability” does not need to be such a scary, unsexy, stigmatizing word. We are the ones that give words their power, after all.
If we use it, and use it well, use it often, use it in good ways, in describing ourselves, our children – all those who have a way of using their minds, senses, bodies (- and in my opinion, feelings) in a way that currently signals “impairment” – then we change the power that lies in the word. We transform it. And we have that power, you know. We can transform words.
“Disability” does not need to be a dirty word. It does not need to be something to be embarrassed or ashamed of. Rather, it holds the potential to a power to see and experience the world in a completely different way.
Read more about disability and the disability rights movement!
Hurricane Harvey has wrecked devastation throughout the Texas area. It has been downgraded from “hurricane” to a “tropical storm” but has stalled over Houston, bringing over 23 inches of rain.
There are people with disabilities stranded in their homes, unable to reach the roofs. Portlight, an organization that works with people with disabilities in disaster situations, is doing first-rate response work, but they need more people and money.
Donate directly on their site through PayPal, because if you go through other sites (like Facebook), it takes a lot longer for the money to actually reach the organization. Donate directly.
Sara Weir is the President of the National Down Syndrome Society (NDSS), which is the organization that spearheads and financially benefits from the Buddy Walks ®™ . NDSS claims to be the “leading human rights organization for all individuals with Down syndrome,” and yet in the face of the loss of Medicaid, they have been, for all intents and purposes, silent.
Silent, when the NDSS has promised to be at every table and stand up and fiercely advocate for people with Down syndrome and disabilities.
Silent, when The NDSS actually have the connections to affect powerful change right here, right now.
A Little Background on Medicaid:
Medicaid is the federal partnership that provides states with money to help pay for healthcare AND programs that help people across the disability spectrum.
A lot of the program funding has something to do with things the Down syndrome community deeply cares about: keeping our kids and their tribe out of institutions. Helping them work. Helping them be productive and integral members of our communities.
If these cuts happen, our kids are likely to be stuck at home, without work supports. Without health care. Without help to reach their goals and dreams.
A Little Background on Sara Weir & NDSS
The NDSS is The National Down Syndrome Society – they raise large amounts of money through their very popular Buddy Walks ®™ across the United States.
That money is supposed to be used to fund the NDSS to help us when we need it.
The NDSS has LOTS of Republican connections – in fact, Sara Weir, the President of NDSS, has a personal membership to the Capitol Hill Club, the exclusive Republican social club, in which she has frequent meetings on behalf of the NDSS.
A strong stance against Medicaid cuts and caps, a strong stance against the new healthcare bill, signed by both Sara Weir and Robert Taishoff (the Chairman of NDSS), leading the public call against these cuts will be powerful.
So far, Sara Weir has not added her own name to any public statement on Medicaid made by the NDSS, nor has Robert Taishoff.
My fellow people with disabilities are placing their bodies literally on the line against these cuts; parents of people with Down syndrome making videos that are going viral about what these Medicaid cuts are going to do to their families. We have columns and articles being written, we have parents, allies, advocates fighting tooth and nail against these proposed cuts that will be so devastating for people with disabilities in the United States of America.
But we are without direct connections to Mitch McConnell’s office or other power-players that Sara Weir, Rob Taishoff and the NDSS have. And the NDSS are not utilizing those connections or speaking up about it now.
In times of crisis, we look for who is MOST able to help in the fight.
Please. Join me in asking – no, demanding – that Sara Weir and the NDSS step up to take a strong stance against this devastating proposed piece of “healthcare” that will affect us all so drastically.
Join me in holding her accountable to do what we are paying her to do: we are paying her to help our kids and community stay safe, healthy and able to participate, through Medicaid and the continued Medicaid funding.
Join me in urging Sara Weir to use her intimate connections with Republicans to halt this devastating proposed bill.
Meriah asked if I might do a post on “disability-related book recommendations? …books that you would recommend for a person with a disability who perhaps grew up with the medical model and is just now starting to branch out in disability culture?”
Second, I’ve only included books I’ve read; there are more books coming out, it seems, on a daily basis, and I’ve only read a limited number, despite the piles of books usually lying around on my nightstand and other parts of our apartment.
Third, when teaching, I’m often asked why disability topics are not included in elementary and secondary school curricula. I know this is changing, but clearly there’s a long way to go. So I’ve begun reading (and writing) books for younger readers. I’m including a few favorites in this list along with adult-oriented books.
Finally, I’ve tried to include books from diverse genres and geared for varied audiences.
A series of essays follows my journey from beginning to identify as a person with a disability; to becoming a disability activist; to a focus on disability culture (including the definition of disability culture I wrote in 1996); and encounters with people and places around the world. While aspects of my life, like every life, are unique, there are also similarities with many other developing disability advocates of the late 20th century.
This is not an easy book to read, because the story of Junius Wilson is horrific—a tale of discrimination, neglect, abuse, racism, and ableism. Wilson was a young, deaf, black man who found himself, inexplicably, in a mental institution. This is well-written academic book, and for those who can stomach it, a tale of disability encompassing most of the 20th century that, awful as it was, was not unique.
Clare has just published a new book, but I’ve not read it yet, so am unable to include it here. However, this book, in memoir style, is a story of transformation, awareness, and difference set in a small, logging town in the Pacific Northwest. It is written poetically, from an author who’s also a poet.
I’ve known Mark Johnson for 30 years, and admire him both as a key member of ADAPT and as a national disability rights leader who excels at facilitating both conversations and action. In reading this memoir, I was amazed at Mark’s journey from a young nondisabled man to learning first how to be quadriplegic, then how to thrive as a person with a disability.
Mark’s southern charm is clear throughout the book, but so is his passion and commitment to a world that needed (and needs) to change. Some readers may recall that in my poem, “Tell Your Story” there’s a section about getting a wheelchair ramp in a movie theater. That story came from Mark and it’s one of many stories detailed in this book.
This book is here because it’s a biography of one of the earliest disability rights leaders of the mid-20th century, who is largely forgotten today by many, if not most of us. tenBroek became blind when he was a boy, as a man he became a lawyer and law professor who helped create the advocacy oriented National Federation of the blind and influenced the Brown v. Board 1954 decision outlawing school segregation, among other achievements.. He was well aware of the need for disability rights and his 1966 California Law Review article, “The Right to Live in the World: The Disabled in the Law of Torts,”, which preceded by only a few years his death at a fairly young age, can easily be seen as a precursor of the Americans with Disabilities Act.
O’Toole’s book is memoir and more. An activist, academic, and artist, she has spanned much of the development of the disability rights movement in the Berkeley, CA area from the mid-1970s through today. Corbett has both been a participant in, and an instigator of, many aspects of the disability rights movement, including, but not limited to, women’s and queer issues, and she has brought a keen, and critical eye, to all these events. At the same time, she is clear about her place in the world as a mother, an athlete, and a scholar. Written with readers who digest information in multiple ways in mind, this is an excellent book about the Berkeley disability rights movement, and beyond to the overall disability rights movement as well.
I debated about including this book, because it’s a few decades old and because AIDS and how it is (and those who have AIDS are) treated has changed so much since Shilts wrote this book. A gay journalist, who died from AIDS, Shilts writes about the beginnings of the epidemic like a detective story and how what was often thought of as a “gay” disease was ignored and discounted. This is an aspect of disability rights often repressed but remains a story that deserves to continue to be heard.
Leroy, one of the founders of the Krip Hop, who I’m happy to call a friend explores music, disability rights, and other topics. While this book is a compilation of some of Leroy’s poetry it’s much more than that as well. It’s a trip down memory lane, into the blues, black and blind history, and contemporary black disability rights. Leroy provides a quiz at the end of the book and from both it and the book, I learned a lot.
One of my students, several semesters ago, introduced me to Armagan, a painter who was born blind in Turkey. This biography recounts how Armagan learned to paint, and how he and his paintings became internationally known. In addition, as I read this book for children I learned Armagan is also an inventor, who has created new forms of paint that facilitate his work.
I’m putting another one of my books in here and including two books geared for kids about Ed Roberts, a pioneering disability rights leader who is often considered the (but is more accurately one of the) founders of the independent living movement in the U.S. and who became an internationally known leader. This book is targeted to Middle grade readers, 8 to 12 year olds. Carson and Connally’s book is targeted for younger readers. While my book sat in CD only format for many years, Carson and Connally published their book. After they did so, I had a number of conversations with Diana Pastora Carson, who encouraged me to get my book out as well and I thank her for that.
Carson, D. P. and Connally, P. W. (2013). Ed Roberts: Father of Disability Rights. Indianapolis, IN: Dog Ear Publishing [For early readers]
This book is geared to younger readers than my book on Ed Roberts. It is distinguished in part by the art of the late Patrick Wm. Connally who knew Ed well. I’ve had one of Patrick’s paintings in my offices for over 20 years, so I’m definitely partial to the art here–as well as the narrative.
Palacio, R.J. (2012). Wonder. New York: Alfred A. Knopf.
I read a listserv post that included an article analyzing El Deafo (see #14), which led me to want to read the book itself. When looking El Deafo up I came across Wonder and I’m glad I did. Augie Pullman is an endearing, struggling, delightful character, with multiple disabilities though the primary focus is on facial “differences”. The story focuses on Augie’s fifth grade year, when he moves from his comfortable world of homeschooling to enroll at a school.
Lots of people love this book, which is soon to be a movie (“Into the Rainbow”) starring Julia Roberts. Despite this, I found the book charming, and the author’s decision to provide multiple perspectives about Augie’s life advanced the story nicely. Even though I kept slowing my own reading, so I wouldn’t get through the book so fast, I was still sad to see it end.
I slightly followed the Shangs’ American Girls campaign to get Mattel to make a doll who looked like Melissa, using a wheelchair. But I was really excited when I read that the sisters had published this book, which is both fictional and autobiographical, exploring what it’s like to be an Asian American, wheelchair using girl in middle school.
Bell, C. (2014). El Deafo. New York: Amulet Press. (2nd – 6th grade)
When I read a synopsis of an article that analyzed this book it didn’t take me long to realize I’d rather find the book itself. While I knew it was a graphic novel, that somehow didn’t register with me as a series of comics, which I’m only saying for any other older folks who might not realize this as well. This autobiographical graphic novel is about the author’s coming to terms as a young girl with having a hearing impairment, using a visible hearing device that she wore around her neck and in front of her chest, and her desire to make friends.
Historian Steven E. Brown (PhD, University of Oklahoma, 1981) is Co-Founder, Institute on Disability Culture and retired Professor of Disability Studies, Center on Disability Studies, University of Hawaii (currently Affiliate Faculty). He served as a 2015 Diversity and Inclusion Fellow for the Association of University Centers on Excellence in Disabilities (AUCD) Diversity and Inclusion Toolkit Initiative, and continues to consult with AUCD. He also works with BCFS in San Antonio on their Emergency Management Division, providing disability expertise.
Brown encountered disability-based employment discrimination based shortly after earning his doctorate, which led to changing his career path. In the 1980s, Brown worked at and directed an independent living center in Oklahoma, organized numerous community advocacy coalitions, and represented regional Independent Living Centers in legislative education about the passage of the Americans with Disabilities Act. In 1990, Brown moved to California to become Training Director at the World Institute on Disability (WID). In 1993, Brown received the first federal funding to research disability culture, which resulted in the monograph, Investigating A Culture of Disability: Final Report.
After relocating to New Mexico, with his wife and partner Lillian Gonzales Brown, in 1994, they co-founded the non-profit Institute on Disability Culture. In 2002, they moved to Hawai‘i, where Brown joined the Center on Disability Studies (CDS).
Brown has published many articles about disability rights and is a national and international speaker. His books include Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride (2003); Surprised to be Standing: A Spiritual Journey (2011); and Ed Roberts: Wheelchair Genius (2015), a Middle Grade biography of the late 20th century disability rights pioneer. He is also a co-editor of the anthology, Rethinking Disability: World Perspectives in Culture and Society (2016). Author page at: https://www.amazon.com/Steven-E.-Brown/e/B004H9QX7Y/ref=sr_ntt_srch_lnk_1?qid=1496349465&sr=8-1
Brown’s work remains driven by the Institute on Disability Culture mission/vision: “Promoting pride in the history, activities, and cultural identity of individuals with disabilities throughout the world.”
When I was 17, I was living in a tiny rice farming village in rural Taiwan with my brother, his wife and new baby.
I was terribly, achingly lonely. There were not many people my age in the town at all – but those that there were, were in school, or preparing for university. They definitely did not speak English. My Chinese being shoddy, the only people I could really talk to were old people – who knew Japanese by virtue of Taiwan being a colony of Japan in World War II – or “mountain people”, the indigenous people who also knew Japanese (because they liked the Japanese better than the Chinese).
I was lonely. Very lonely.
So what I got to doing every day was bicycling over to a mountain I was fond of. I’d hike up to the pagoda on top, smoke a closet cigarette or three. Pray. Study holy writings (I’ve always loved religious studies).
I got to looking around and realized the mountain was even higher in the back, behind the pagoda. Full of tumbled bushes, weeds, trees. Taiwanese Jungle. I started to bring a cane knife (-machete) with me and began the process – one that would take me over 5 months – of whacking out a path all the way to very top of the mountain. The very top.
Sometimes as I struggled, whacking, pulling, cutting, heaving, I wondered why on earth I was doing this. Why I felt so bloody compelled to create this path. Why? When I’d be leaving Taiwan for sure, when it would go back to being bush. Who would use it, what was the point?
The only answer I could ever come to within my heart was that I wanted to. I wanted this path. I wanted to sit on the very top of that mountain and pray. That’s what I wanted. Waste or not, I reckoned, it was what I needed to do.
6 years later, when I was 24, I went back to Taiwan to see my brother. Out of old time’s sake, I wanted to visit my old mountain. I drove my scooter there (an upgrade from my bicycle!), Parked it at the base,hiked up to the pagoda. I thought that for sure my path would be gone – it had been 6 years, after all, but I wanted to check it out nonetheless.
I found that someone – who? – had discovered it. That someone had carefully lined the sides of the path that I had spent so many hours creating with beautiful smooth white stones. I couldn’t believe it. Stunned, I raced on up to the next level – and the next – and the next – and the next (there were 5 levels that I had carved out) and they were all lined, all cared for.
When I reached the top that day, I threw myself on the ground and cried that something so unforeseen had happened. I had created something from love with no expectation that it would live beyond me – but it had. My heart was full and happy and the beauty and magic in the world shone clearly.
Yesterday a new member of a group that I’ve started asked me why I bother doing what I do. “What’s the point? Why bother with this anyway?”
I thought of my path in Taiwan. I thought of Martin Luther King Jr’s words: Our lives begin to end the day we become silent about things that matter. Sometimes I can’t see the end in the beginning – sometimes it’s only recognizing that it matters to me and so it is important and should be acted upon. Sometimes it’s simply responding to a feeling that I am compelled to respond to. Create this , do that. It doesn’t always make sense. It doesn’t always have to.
“Why bother?”Indeed. Why. When we know we are facing an uphill climb anyway. “Why bother?” It hurts to be misunderstood. “Why bother?”I should focus on myself, right. “Why bother?” It’s going to die off anyway. “Why bother?”I won’t be here forever.
“Why bother?”Because I care “Why bother?”Because I can do no less “Why bother?” Because it matters to me
The universe and God are mysteries. They operate in ways that I will never fathom. But I trust that good will come from a first step that is made with love, from care, because it matters. I know that it is only mine to act; not necessarily to see the end. To have vision, yes, but more importantly, to trust that it will all unfold as it should.
5 of the most common myths about disability are talked about here – starting off with the biggest one:
1. We all use wheelchairs
I was late in joining the disability community (“island time” as they say in the Pacific), because in my family, the only “real” people with disabilities were people who use wheelchairs.
My being deaf and my mental pieces were just things that God was sending to me to overcome, make me stronger (and so forth). “With fire we test the gold!” was said a lot to me.
What this did, however, was make me feel like a freak. Because something was clearly up with me – I knew it, I was experiencing it – but I had no community, resources or friends who were similar. I was trying to be non-disabled.
I had no idea that being deaf counted as a disability, that wheelchair users only count for a fraction of disabled population in the United States. Non-visible disabilities, in the form of reading/learning disabilities, chronic health conditions, mental illness, d/Deafness, speech disabilities, and neuro divergence are everywhere.
You know it, when you think about it, because there are people all around you who have disabilities.
But since “disability” is so stigmatized in our culture, who on earth would want to “come out”? I mean, you really have to have a pressing reason to put yourself out there (if you don’t have to).
2. That we are incapable
People assume with the “dis” part of “disability” that people with disabilities are without ability. But ~
“DIS” prefix is not only “un” and “not” but has a Latin and Greek derivative meaning “duo” and “two” hence *another* way of doing and being. – Heather Watkins
So rather than a group of people who are incapable, people with disabilities are a group of people who do things another way.
They are people who see, walk, hear, speak, feel, process, emote and experience in the world in another way.
My daughter with Down syndrome has a disability. It’s an intellectual disability, which means that she learns, speaks and emotes in a way that’s different from mainstream.
I am deaf – and have mental pieces that I’m still trying to understand. I simply hear, see and emote in a way that is different from mainstream.
Neither my daughter nor I are incapable! We are not without ability. We have another way of processing in our lives, a duality in our lived experience.
3. We are to be pitied
Our culture sets disability up as something to avoid at all costs. It follows the medical model of disability, meaning, that disability is something to be fixed.
Since disability is something to be avoided, people who are disabled are naturally pitied. Our lives are held up as examples, ‘there, but for the grace of God, go I!‘ and so forth. In that pity, there is a also a disassociation – like, ‘this couldn’t happen to me!’ or, “I could never deal with that…” (- so the good Lord in His infinite mercy wouldn’t test you with something you couldn’t bear, because only strong people have disabilities, right?!)
The Pity Narrative is a really old and tired one; it needs to be retired.
In it’s place, we need one that recognize that people with disabilities just need a level playing ground. We need access, we don’t need pity. We need the opportunity to go to school, work, have medical coverage.
4. We are not sexy
This one is kind of hilarious when you put it in context.
Anyone seen Nyle DiMarco? Lady Gaga? Or how about Halle Barry, Tom Cruise, Mark Ruffalo, Micah Fowler, Lauren Potter, Cher, Marlee Matlin, Carrie Fisher, Prince? Seriously, the list of artists, musicians and actors with disabilities is a mile long. It almost seems as if it’s a requirement to be successful in the arts. Who knows? *shrugs* Maybe it is.
To say disability is unsexy is just ridiculous. I mean, disability in and of itself is nothing more than another way of doing something, right? So the presence of sexiness only has to do with the person who has it. Plenty of people with disabilities ooze sexiness; plenty don’t, just like there is a whole world of non-disabled people who are also sexy and not.
5. We'd rather not be disabled
The question of whether or not people with disabilities want to be non-disabled is just as complex as asking if someone would prefer to be white, rather than black.
Do black people – who are oppressed in a majority-white America – want to be white?
People with disabilities are also oppressed. Access is a bitch. Violence against people with disabilities is rampant. Education, employment and opportunities are often a fight, discrimination and prejudice are a given. So would we rather not have our disabilities?
Well, I think most everyone I know would do without all the bullshit: the oppression, violence, discrimination, prejudice and lack of access.
But if all of that was removed, would we really want to be non-disabled? I mean, for many of us, our very identity is inextricably linked to the way in which we move through our world. So, the question for those of us who feel that way is, “would you like to remove your identity?”
So there you go! The 5 most common myths about disability, plus a bonus of the brilliant definition of “disability” by Heather Watkins (and I think she said that Lawrence Carter-Long has been saying that too? Very cool).
“Traumatic Brain Injury”- for me, the words themselves conjure up images of someone running around with a dent in their head, or of a brain sitting by the wayside with a bandage on.
And I have traumatic brain injury.
It’s weird to read the words, “traumatic brain injury” and associate that with my own Control Center, weird to think of how freaky that sounds but really, how very non-freaky it really is.
Weird, too, to think of the thousands of people that are going to acquire this disability, that are acquiring this disability right now, this very minute, as I type. Because you know what? Out of all the disabilities out there, this one is just about the easiest to “catch” – it’s as simple as a swerve, as uncomplicated as a fall. Getting a brain injury is a piece of cake.
I think that since it’s such a breeze to acquire a brain injury, we all ought to understand a little more about it. I mean, if I, someone who has a brain injury, think it can sound freaky and scary, how much worse must it be for someone who doesn’t even have it? Right? Okay, so:
What Is Brain Injury Anyway?
Brain injury is just what it sounds like: it’s when you have hurt your brain by rattling it against something. Super common ways of acquiring it are through car accidents or head-banging sports like football. Bicycle accidents, motorcycle accidents, anything, really, that will bang your brain up good and solidly against your skull.
It’s not one size fits all
There are a lot of commonalities among people with injured brains but there are plenty of differences too. A lot depends on where you hurt your brain, the specific area, and how hard you hurt it. But all brain injuries are classified as either “mild” or “severe”. “Mild” is defined if “loss of consciousness and/or confusion and disorientation is shorter than 30 minutes’ ; “severe” is defined as a brain injury resulting in a loss of consciousness of greater than 6 hours and a Glasgow Coma Scale of 3 to 8.
The spectrum for what Traumatic Brain Injury – TBI – looks like in action is huge. Enormous! People can have slurred speech, altered personalities, or just be really scattered with no memory to speak of. Really typical areas that are affected though are:
I think what is ultimately hardest for most people who acquire a brain injury, as well as for their loved ones, is that unlike other acquired disabilities where you are suddenly unable to walk or talk or see, etc, with brain injury you are all of the sudden different from your very self. Your complete orientation can and often does change, because the motor that drives you has been swapped out. Instead of driving a Ferrari convertible, for example, you are driving a VW bug. You are still driving, sure, but it’s really different.
The changes are hard to deal with. It’s difficult to switch gears.
Life doesn’t end with brain injury though, and accommodating a brain injury can be surprisingly easy. It’s really a matter of understanding exactly what the issues are with the brain.
In my own life, I use many tools to help accommodate my own injury.
For example, I use multiple calendars – both paper and electronic. I use timers and I have reminders programmed into the i-Phone and computer. So far, so good, right? A lot of people do this!
I schedule everything I need to do in a time that will allow for concentration. Music helps me to keep my focus, and flow charts help with organizing. Fluorescent lights used to trigger brain shut-downs on my part (- I would just fall asleep when I was around them), but I have healed a lot from my injury. I just get distracted with them now, so I avoid them. Lots of accommodation ideas on the Job Accommodation Network
Which brings me to a final important point: you can heal from brain injuries. The brain, like any another organ, is remarkably resilient and is capable of healing.
Brain injury sounds scary and no doubt about it, it can be. It can also be interesting, because you sure do learn a lot about yourself, how you function, and how important environments and tools are when you have a brain injury. Of course, first you have to get over the hump of adjusting and learn how to function with your altered brain before you are likely to find much interesting, but it will happen.
More Info & Support:
Brain Injury Association of America: http://www.biausa.org/
As a mom of a child with Down syndrome, I’m always looking for something new and good that relates to our family on TV. As a deaf mom who has long been a disability rights activist, I’ve found that to be pretty damn hard to find.
“Speechless” is a new TV show that seems to fit the bill. It’s a show about a family. There is the brainy middle child, the athletic youngest, and the eldest, who has Cerebral Palsy. The dad is laid back and the mom is an energizer-bunny. I suppose you could even say it’s a sit-com,because it is funny, and it’s situational.
And it’s not completely fucking up.
It’s amazing – Speechless is the first TV show in which the central character has a disability, and all of the story lines flow around him. Many of the story lines are also based on issues that we really have in the disability community.
When I first saw it, I was taken aback by the mom (played by Minnie Driver, whom I last saw, incidentally, singing about 10 feet away from me at the Black and White Ball in San Francisco). She’s fully-charged “special needs mum”; all push, prod, pull. I squirmed a little. And then I recognized her – she’s the “special needs warrior mom” on Facebook! The one who posts memes about how she’s a bear (or tiger, or some other such fierce animal) who will absolutely DO EVERYTHING FOR HER KID WITH SPECIAL NEEDS (sorry about the all-caps; I felt they added the right flavor to that).
You know who I’m talking about, right?!!!
Once I got that, and didn’t take it to mean that the show was saying (however obliquely) that I (a fellow mom of a kid with a disability) should be like that, I relaxed and enjoyed her character a lot more.
Moving on, Episode 3, which I watched last week. Tons of spoilers here, so either watch it first or come on back when you have. It’s chock full of good stuff:
Home Access: JJ can’t get through his bathroom door easily. Of course that speaks to building code, and the fact that most buildings are using Universal Design. (Okay, maybe I’m totally inferring the Universal Design piece. But I still got that link in there!).
Mom, The Martyr: Mom lives for JJ and his “special needs” (and you know how I feel about that word, gah). She just can’t stop hovering over him, can’t have fun doing things that are not related to him or his access, his inclusion, his education, his life. Mom is revolving her entire self around JJ! And it’s affecting everyone!
Siblings: The siblings don’t do stuff that isn’t accessible, and they don’t really know each other because they don’t engage in stuff just the two of them.
Inspiration: I cried, laughing over this part. JJ’s aide gets going with how far he can push the “inspiration” button.
Others Deciding: This was my favorite part. The aide took control of JJ’s day, going whole hog over “inspiration” and having fun doing things he could never do without a handy wheelchair-using kid by his side. JJ finally nips it by saying something like, “this day was supposed to be about ME and what I wanted. You took away my voice. You don’t get to do that.”
Speechless is completely brilliant.
I love how all of these real issues are brought forth. I mean, this stuff is REAL. People with disabilities do get trampled over by people without disabilities who are deciding what’s best for us based on what they want. “Special needs moms” are all over the internets. Inspiration and it’s sister, Inspiration Porn are living it up in America and access feels more like an ongoing question than a legal right.
For a show to tackle all this, and make us laugh while it’s doing it? Fucking brilliant.
I have always had Cerebral Palsy. I also consider myself part of the disability community as well as an advocate for people with
Star Trek or Star Wars? Star Trek
If you could live in any other country for 2 years, where would you go?
I’ve been to many countries including England, Germany, Denmark, Switzerland, Norway, Japan, Israel, Canada and Mexico. In my golden years I wouldn’t want to live anywhere but the USA!
What dish would your bring to our community picnic potluck?
Cookies and fruit pies
Now That We’ve Been Introduced…
What do you do:
As you know, after 29 years of working at Wells Fargo, I retired to start a disability-focused employment company that specializes in consulting on staffing and placement issues. I quickly realized that there are systemic problems that intrinsically inhibit people with disabilities from working and being productive. Our society holds very low expectations for individuals with disabilities.
Defining disability as the “inability to work” in order to receive disability benefits is an inherent disincentive. I am dedicating the rest of my retirement to see that these antiquated policies are changed. I am doing so by working with The World Institute on Disability where I am leading an initiative called CareerACCESS. I am attaching a brief description of CareerACCESS. To learn more about it, please see http://www.careeraccess.org.
So now I am trying
a) run Abilicorp
b) lead the CareerACCESS initiative
c) be a good board member on 3 non-profit agencies,
d) be a good husband and father and friend and
e) deal with a progressing disability – not necessarily in that order!
How did you come to doing what you do? How has your career trajectory flowed?
Basically, I owe a lot to my Mom who, being a holocaust survivor, believed I HAD to succeed, to my special education teachers and classmates who believed I COULD succeed, to my high school and college environments that showed me how to succeed, to the disability community that encouraged me to succeed, to jobs including CTP and Wells Fargo that ENABLED me to succeed and of course Denise and David who made me feel loved.
Where would you like to see yourself in 5 years?
5 years from now I hope to be completing my PhD, advising the implementation of Social Security reform that enables people with disabilities to work via CareerACCESS, writing a book on disability and money, spoiling a grandchild, and enjoying mocha with friends
Not to be morbid, but what do you want people to remember about you when you’ve gone?
‘He was a good guy. He did a good job, Go! Go! Go!’
Who or what inspires you?
Judy Heumann, who I have been close with since I was 4 years old and
who has tirelessly worked for the Disability Movement. My father who
was a simple down-to-earth guy who knew what he wanted (which was to
see his 3 kids grow up and be OK)
If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?
Use Personal Assistant Services! Use time and energy for important
things. There are wonderful people available, ready and able to
assist. To be independent, you need to know how to be dependent
What do you like about your particular disability?
Because my disability is so obvious, I’ve had the great opportunity of
observing the world from a ‘different’ view point. Because I couldn’t
do things the ‘normal way’ I had to create ‘my way’ of doing things.
It was (is) great to know there’s always a way to do what you really
want to do.
Any one thing that you wish people would *get* about disability?
We are indeed people first. Some of us are nice, some not-so-nice,
some funny, some warm, some cold, some bright, some boring etc. We all
have good days and bad days. Enjoy what you like and forgive the rest.
What single piece of technology makes your life easier?
My powered wheelchair! Before high school, I never used a wheelchair.
In high school and undergrad college, I only had a manual wheelchair.
The day I arrived in Berkeley (8-23-1974), Ed Roberts convinced me to
use a powered wheelchair. Since then, you could take away my car and
my home and my belongings but don’t take away my powered wheelchair!
A new short film just came out for World Down syndrome Day.
“How Do You See Me”
Some people wildly loved it! Some wildly hated it!
Some people hate this short because they think it promotes disability erasure. That is, that the film is trying to get people with disabilities see themselves as without a disability.
I don’t agree with that perspective. I liked “How Do You See Me.”
My take on it was that it had nothing to do with the woman with Down syndrome wanting to be “normal” or not accepting herself, but rather that she loves who she is. The mirror of image (with the person without Down syndrome) to me is simply a creative way of asking the viewer to examine their prejudice and conceptions about people with Down syndrome.
To me, this is about questioning our stereotypes, not about denying disability identity.
BUT, HAVING SAID THAT, there are so many people whose opinions I respect who did not see this short in the same way as I did AT ALL. Even my Beloved didn’t – he watched it and immediately thought it was promoting disability erasure.
I think if the overall response to it is so divided, it’s not a win. I think something much more clear-cut would be better – like someone suggested, having the camera showing the narrator from the back, so you can’t see her face until the end, so that it always only shows the woman with Down syndrome.
But the one thing that “How Do You See Me” got right was that it certainly stimulated a lot of thoughtful discussion about disability identity, disability erasure, inspiration porn, and what would constitute a great acceptance piece. I am just wondering about the thoughts on individuals with Down syndrome.
Where is the voice of the actress with Down syndrome in all of this? How does she feel about it? What about other adults with Ds? I’m sure that there is likely to be as much of a mix of opinions within the adult Down syndrome community as there is in within the adult deaf community – or the cross/disability community – but it always rubs me wrong (in a sad and feeling-helpless way) that when something like this emerges and there is a lot of discussion on it, we don’t hear from the voices that matter the most on it: the voices of individuals with Down syndrome.
It seems like I dropped a bomb with my last post about The Mighty. That’s cool, getting a conversation started is something I believe in doing. The only part of it that I feel the need to talk more about is the one point that a lot of people seem to have misunderstood.
And that is, the points about parents telling their stories.
I never said that parents should not tell their stories. In fact, I said the opposite; that parents should tell their stories, that those stories are crucial to the relay that is parenting kids with disabilities.
What I was trying to say is that parents can’t tell their child’s story. Which should make sense, right? I mean, think about how your parents would tell your own story: would it really be your story?
No. It wouldn’t, and you know it wouldn’t.
I think we parents can – and should – tell our stories just as they are. From our own vantage point.
Rather than say, “Moxie’s saying you should eat tomatoes when you wear a wonder woman dress”, I would say, “Moxie looks like she is on cloud 9; total bliss, when she’s facing a bucket of tomatoes she can call her own. And the wonder woman dress is icing”
I can’t say what she’s saying if she’s not saying it.
I can’t put words in her mouth. I mean, I could, but if I did, then they wouldn’t be her words; they’d be mine. They came from my head, not hers.
Our kids might know ASL or another signed language. Or they might be able to verbally express themselves. Or not. But regardless of their ability to talk or communicate via an expressed language, they have their own stories to tell.
Their lives are theirs, they are not ours.
We are the parents and we do not walk in the path of our child; we walk alongside our child. We can try and help our child express their own story, but we cannot tell their story for them.
I feel like this post is just silly in a way, you know, though, because the people who write those types of memes or posts, the ones talking about how “Johnny just wants you to know that HE IS GREAT” or whatever, aren’t the type of people who read this blog anyway.
I feel like this is probably just church preaching to the choir.
Cows to the cud.
I think there is a world of difference between trying to be an advocate for your child and actually trying to speak FOR your child. The advocate asks the child; the advocate tries to empower their child. The advocate tries to help the child express their own story.
Speaking FOR your child is about thrusting your opinions and ideas ON your child. Telling your child what they think/feel; telling the world what your child thinks/feels, even if you don’t actually know. Even if you never asked. Assuming that because your child doesn’t talk, they don’t have an opinion or a feeling on a subject.
My daughter doesn’t talk much.
She may or may not ever learn to talk much.
Her lack of verbal expression doesn’t mean that she doesn’t have her story to share though, does it?
God, I hope not.
And I can’t believe that regardless of her verbal expressive ability she doesn’t have her story to share – because it just doesn’t make sense to me.
She’s a vital child with a life that is full.
Roads and choices lie before her and I know it’s going to be an interesting journey for her. I see my own role as a facilitator of sorts – I need to try and figure out how to help her tell her story, and how to help her learn to navigate her world and gets what she wants.
Reach her dreams.
That’s what I meant about parents telling our children’s stories: NOT that we parents of kids with disabilities shouldn’t tell our own stories; I think we should. We definitely should, and I think we yearn to, need to, and that others also benefit from our sharing.
But I also think we should try and help our child tell their own story, rather than put words in their mouth.
As a parent of a child with Down syndrome and as a woman with a disability, I straddle two worlds: the community of people with disabilities and the community of parents of kids with disabilities. Add to that the fact that my main disability is deafness, and I am in a whole ‘nother sub-community within the disability spectrum. The deaf, you see, don’t usually integrate much with other people with disabilities. A lot of deaf people won’t even consider themselves as having a disability – but that’s another blog post.
It wasn’t easy growing up, deaf. But sometimes I’m not sure how much of it was being deaf and how much of it was growing up as a missionary child, moving every few years in countries that my parents were completely foreign to. Growing up a 3rd Culture Kid isn’t often easy. Growing up, point blank, isn’t always easy, either, is it?
But the point I’m trying to make is that I did it. I made it. I went through the shit-storm of my adolescence, the rage, the self-harm, the abuse, the self-esteem that was so low it literally hurt me. I walked through all of that – and it took me something like twenty years to develop a thin scab that protected my heart, my hurt. I was healing, and in the protective embrace of the proud and strong disabled community of Berkeley, I found my own ground.
I found strength in the disabled community, a sense of pride in who I am, in and of myself.
I am deaf. And I have PTSD and TBI. I don’t live my life overcoming these things; I live my life on the platform of these things. Which is to say, the way that I perceive the world – both in how I hear as well as in the ways of my brain – is the framework upon which I move in my life. It might be different from your framework, but I don’t need to overcome my own framework to try and make it more like your own framework, do I? Nor does anyone with a disability. We all have our own frameworks and those very frameworks may or may not include a disability but they all help us to experience our lives in a uniquely marvelous way.
In other words, I am deaf. My world functions wonderfully as a deaf person. I like being deaf. I don’t need to try and not be deaf in order to serve anyone else’s idea of what a good life is. I have my own good life. And my own good life includes being deaf.
I know for a fact that a great many people with disabilities have come to the exact same conclusion that I have, either after similar half-lifetimes of pain and disenfranchisement (or not). We realize at some point that we LIKE OURSELVES for who we are, that our disabilities enhance the way we experience our lives.
We realize that we don’t need to change, we never needed to; what needs to change is the way the world views disability.
The current viewpoint (either a burden and a lodestone or a hero who inspires others because of the ability to frickin’ blink) doesn’t serve the millions of people with a disability who want to work, receive an education, be married, have sex, be parents. It doesn’t serve the skill sets that people with disabilities have, it doesn’t recognize or use SO MUCH talent within the disability spectrum.
The current viewpoint seeks instead to mold people within the disability spectrum into the narrow confines of what is valued in society right here, right now. And that is totally outdated, useless, a waste.
Now, my daughter has Down syndrome, a disability that was utterly foreign to me before I had her. A disability that has been poorly understood for most of it’s known existence, and one in which it is rare for adults with the disability to form their own communities and collaboratives.
Parents within the Down syndrome community therefore, walk this line between endeavoring to advocate for their child with Down syndrome, trying to make the world more hospitable towards people with intellectual disabilities and helping to facilitate the expression of people with Down syndrome themselves. Stories – always a unique and powerful means of social change – are especially important in the intellectual disabled community, because they are a means of connecting, supporting and empowering one another.
That line is crossed when the parents try and tell their child’s story.
You see, noone knows what another person’s life is truly like. You just don’t. Your interpretation of an event, an expression, an utterance, is all based on your own experience, history, personality, perceptions. You simply cannot tell someone else’s story for them, you can’t explain their life for them.
In gender terms, that’s called “man-splaining”, in racial terms, it’s “white-splaining” and in disability terms, it’s “able-splaining” – when an able-bodied person is attempting to explain our experience; often to us.
I think you can imagine how it must feel to me and to others in the disability community, to reach this point of acceptance and pride in who we are and what we bring to the table, and have some able-bodied parent (or similar disability-ally) try and explain components of our experience! Worse, to become objects of rampant inspiration porn; made heroes by the very fact that we exist!
This is a site that I was initially unsure of and so when they approached me and asked for specific pieces, I helped out. I know that my Down syndrome Blogs site was ready fodder for them; they went through it and found quite a few blogs and pieces to post on their site. I even helped make a post go viral for them on my own Facebook page – over 35,000 shares!
But over time, I’ve noticed that while they say they are all about the voices of the disability community, they really aren’t. They are about what is going to be read and shared, bottom line, and that is NOT the stories that are truly by and for disability. Those are the stories that are by and for parents of kids with disabilities. Those are the stories that are going to get shared and passed around and “awwwww’d” and cried over.
The Mighty is disability on click-bait. It’s the viral-nova buzzfeed of someone’s idea of disability.
The Mighty is not built by people with disabilities; it’s built on the stories of people with disabilities. It’s built on the pain of our experiences, but seen through the eyes of others and explained through their own personal lenses.
And, frankly, I’ve had enough of it. I’m just sick and tired of able-splaining. I’m tired of sites, however “well intentioned” that are about promoting the stories of people on the disability spectrum from an able-bodied perspective. I’m tired of the porn. I’m tired of all those letters “To The Person Who Had an Interaction with My Son” – because while the parent has every right to write those letters on a parent-focused site and a site that is purely about parenting a child with a disability, that right is not theirs on a site that purports to be about stories of people with disabilities.
To be clear, I don’t think it’s the parent’s fault that this is all happening. I know many parents that have written for The Mighty, and they do so both in the hope that their writing will change things that are foul in the world, and of course, in the thrill of getting published. I know that most don’t realize that they are unwittingly becoming The Mighty’s best free marketers (“look! I got published by The Mighty!”) with their shared links and glee in being recognized by someone who values their writing.
The Mighty is not a site that is honestly seeking to empower the voices of my own disabled community. They are not. They are out to promote the sop that people with disabilities have specifically asked them to refrain from posting because they disempower us – namely, the telling of our stories by another, the use of inspiration porn, and posts that are designed to tug your heart and jerk your tears.
And this is why I’ve had it with The Mighty.
The follow up post to this is Telling Your Disabled Child’s Story, which I wrote because I felt that piece was misunderstood in this. If you are a parent, that post is specifically for us. _________________
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3 years ago or so I started a site called “Two Thirds of the Planet”.
It was called “Two Thirds of the Planet” because the site was all about disability, and that’s what they say, you know: that two thirds of the planet has a connection with disability in some way.
Well, (like many of my ideas), the timing was off – it was a little too early for me to truly dig into another site, and it was placed on the backburner in my head, where it’s been simmering and stewing.
I think the time is right now. I moved it to a front burner, dusted it off, and polished it a little:
is now where I’ll be posting my disability posts, the Voices of the Disabled Community series, and an exciting new Instagram project called 365 Days with Disability that I’m partnering with the Disability Visibility Project in producing. More on that in a bit.
In the meantime, here on this blog, I’ll be focusing on family, travel and life off the grid. A little bit about disability, but not that much.
There was a great post out last week by Carly about moms who blog about their kids with disabilities, or “special needs” as it’s popular to say here in the U.S.
Her post was excellent – it’s here – I think you should take a minute to read it, if you haven’t already. I’ll wait.
Okay? Read it?
I’m a person with a disability and I’m the mother of a person with a disability that is different from my own. It’s also a disability that has enormous discrimination leveled against it, it’s a disability that has few self advocates. And it is a disability that faces prejudice even from within the disability community. My daughter has an intellectual disability; Down syndrome.
Choosing to keep my daughter, making the conscious and informed decision to bring into the world and raise an individual with Down syndrome was one of the hardest decisions I’ve ever made in my life, if not the hardest. And by doing so, it literally changed my life. It gave me balls to do everything else – quit my job, take huge risks and flying leaps into unknown`yurts off the grid.
I want to write about that.
I want to write about how it feels to grow that kind of courage, about what a choice like keeping your baby that has been diagnosed with Down syndrome can result in. I want to write about how deeply it has affected me. And I understand that other parents of people with Down syndrome do, too.
It’s our own version of the Motorcycle Diaries, being Che Guevara and having the world change us, so that we can change it. It’s big, it’s profound, it is our story.
I think that so long as we keep to that, it’s staying true to our selves. We have our story – all of us do – and it’s no less by the fact that it’s a parental one.
But we cross the line, I think, when we start to tell the story of our child.
When parents of kids with Down syndrome, Autism, Deafness, etc, say things like, “THIS is Autism” or, “the challenge of being Deaf.” The parents are absolutely unqualified to tell those stories or make those statements because they really don’t know. They can’t speak in the voice of their child and tell the world what their child is thinking or saying, because they are not their child. Full stop.
They might think they are qualified to do so, or they might think that they know what disability is all about because they are raising someone with that disability, but they are not walking in the shoes; they are walking alongside the shoes.
There is a world of difference in that perspective.
Parents of people with disabilities need support and need to connect with one another.
Their own rich, deeply powerful and beautiful stories are a way to do that. I started Down syndrome Blogs and hosted about a hundred blog hops on this blog as a way to help facilitate those stories. But when I realized how few stories were being told by people with Down syndrome themselves, I switched it to A Day in the Life with Down syndrome – with the emphasis being on stories told by people with Down syndrome.
We parents need to find a way to share our own stories as parents, and connect with one another while still giving our children the space and wherewithal to tell their own stories the way that they will.
We need to let them shape their stories. We need to provide that foundation for them – a stable support – and step away. Their story is not ours, it never was.
Like Gibran says,
They come through you but not from you,
And though they are with you yet they belong not to you.
You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
It doesn’t matter what disability a child has – if she is nonverbal or communicates in a way that few understand.
Their story is theirs, and theirs alone to tell.
I hope many of these “special needs” parent bloggers will take a page from Carly’s post and respect their children enough to quit telling their story.
Through that respect, they will also be teaching their child that they are worthy of respect and actually giving their child the surge of the self-confidence that they will need as they navigate their future.
I have had physical disabilities all of my life, since birth. I have Arthrogryposis.
Star Trek or Star Wars?
Star Trek. I like all of the series, but the Original Series is my current favorite. Star Wars is fine, and of course I loved it when the original trilogy first came out, but the whole idea of the Jedi bothers me … a small number of people born with inherited elite abilities who therefore have the moral authority to rule and dispense justice. Kind of like aristocracy, but with some weird Sci-Fi / biological justification. Yes, I’m a nerd and yes, I overthink things.
If you could live in any other country for 2 years, where would you go?
What dish would your bring to our community picnic potluck?
Now That We’ve Been Introduced…
What do you do:
I am a disability blogger and podcaster. I also tutor community college students in writing.
How did you come to doing what you do? How has your career trajectory flowed?
Right through high school and college, I told everyone that I didn’t want to work in the disability field or join any sort of disability group. I felt that way partly because I didn’t know that anything like Disability Culture or a Disability Rights Movement even existed. It would probably be more accurate to say that I had been told about these things from time to time, but it went in one of my adolescent ears and out the other.
Then, during my senior year in college, I heard about the Deaf President Now movement at Gallaudet University, and soon after learned about consumer-directed, activist oriented Centers for Independent Living. It revolutionized how I viewed disability. After graduate school, I started working at my local CIL. I worked there for 23 years. For the last 13 I was the Executive Director. I left that position because I was exhausted, both physically and mentally, and because I wanted to explore other aspects of disability culture, mainly through blogging and social media.
Where would you like to see yourself in 5 years?
Teaching English 101 part time at my local community college, plus blogging, and podcasting. Another possibility is overseeing some kind of network of disability blogs and / or podcasts.
Not to be morbid, but what do you want people to remember about you when you’ve gone?
I want people to know that I enjoyed my life.
Who or what inspires you?
The online disability community inspires me, particularly its advocacy, diversity, and confidence.
If you could say something to yourself in the past -that is, the you that was really struggling with something related to disability – what would you say?
You don’t have to look away from your disability and shun other disabled people in order to be a happy and interesting person. There are ways of consciously being a disabled person that are exciting and fun.
What do you like about your particular disability?
This is a difficult question to answer, but to be completely honest, I like that my disability doesn’t affect my intellect. I like that it hasn’t prevented me from being able to explore and understand life deeply and intellectually. I am grateful that for the most part, I have always understood what is happening to me at any given moment, and I have rarely felt profoundly disoriented.
Any one thing that you wish people would *get* about disability?
I wish more people would *get* that there are many valid ways to view disability. I’m not just talking about the obvious fact that everyone’s experiences and thoughts are unique. I’m saying that you don’t have to choose between a strictly-defined Medical Model or a strictly defined Social Model. Being strong and clear about these things is important because it helps people make sense of disability, but as descriptions of actual experience, all models are at best only partially effective. Having a positive view of one’s disability doesn’t mean you never wish you weren’t disabled, and working hard fix some aspect of your disability and fit in doesn’t mean you hate your disability or yourself. We can vary our thinking. We can blend ideas. This is as important for disabled people to *get* as it is for non-disabled people.
What single piece of technology makes your life easier?
My ventilator, which helps me breathe at night, and has done for the last 30 years, keeps me alive. Convenience-wise, I would have to say my computer, which is vital to my blogging, tutoring, entertainment, and organizing my life so I can use my limited physical stamina as efficiently as possible.