There Are No Words.

I wish I could say something new about George Hodgins.

I wish there were words to really express
what a tragedy his death is,
and the deaths of other Autistics,
other People with Disabilities.

There aren’t words.

Just as there aren’t words to express
what horror and tragedy
the Murder of Trayvon Martin
Who was Black, but not Autistic
or of Stephon Watts, who was black
and Autistic and scared, holding a
butter knife, or the murder of
Ernest Vassell last fall for
holding a toy gun while Black
and Autistic. (Or the arrests
of Neli Latson, and of his mother
for calling people on racism.)
This is what has been done to
Young Black Men in this country.
To Young Black PwD.

There aren’t words.

There aren’t words for
the horror of  baby Rylan
Rochester
, age 6 months,
whose mother thought he
might be Autistic after working
At a hospital serving Autistics
and so she smothered him.

There can’t be words.

There can’t be words for
The grief, anger, and fear
of living in a world where
Hate, fear, bigotry, and
complex social mythologies
Let people make excuses
for murder. Lets them empower
Blais after her sentance, or
air Latimer’s vitrol while
blocking dissenting comments.

All I can do is show you other words,
and hope they can be enough.

_____

In memory of George:

Kassiane at Radical Neurodivergence’s You keep killing us, and I am PISSED and The words said for George.

Autcast’s Why I No Longer Support the Autism Society of America

Lydia at Autistic Hoya’s Letter to the Parents of Autistic Children and Not human anymore – Is this what “ally” means?

Amanda at You Need A Cat’s Another murder. Please no.

Weird Law’s When perfection is deadly

Shannon Des Roches Rosa for BlogHer’s My Autistic Son’s Life: Not Less Valuable

Brenda at Mama Be Good’s Perpetuating the Stereotype: Autism, Parenting, & Murder

Other links of relevance:

Krip-Hop Nation’s Broken Bodies Pbp: Police Brutality & Profiling Mixtape and Where Is Hope? Documentary

In Memory of Stephon, Justice for Stephon Watts.

Not Dead Yet

Second Thoughts

Disability Rights Education and Defense Fund on Assisted Suicide

Please comment to add more links on these issues.

_____

March 30th and on, Vigils for People with Disabilities Murdered by Relatives and Caregivers are happening under the direction of ASAN. These are cross disability events. The current list of vigils is at the above link, and if you absolutely can’t find a way to get to a vigil in person, I’ll be hosting the virtual vigil via tiny chat for those who are in rural areas or are housebound. (After all we are people too, even when our disabilities keep us in our homes or we live in the country.) But please, try to get to or organize a vigil in person if at all possible!

Thankfulness, Intent, and Impact

Places all over the internet, people are posting about things that they are thankful for this week. Today I’m posting about something that people expect to be thanked for, but which honestly I shouldn’t have to be thankful for. That’s right, I’m talking about your good intentions.

I was recently at a conference when I was confronted with an intent vs impact situation. I won’t go into the details- I was satisfied beyond belief by how the conference manager tried to remedy the situation- but in the aftermath, I realized it was time to write this post.

You see, when the conference manager tried to address the situation, the individual- who had said that I “wasn’t Autistic” and in response to my reaffirming my diagnosis “but you seem so nice”- responded that it was all “meant as a compliment.” This is not an isolated issue, as any number of advocates can tell you. Being a person with a disability can sometimes mean you get the “compliment” of being told that you “don’t seem that disabled” or that you are “so inspiring.” It also can mean that when you get upset about this, people pull out their intent.

But here’s the thing: intent isn’t magic. The fact that you were intending to pay me a compliment doesn’t obligate me to be thankful when you say something that reinforces stereotypes about people like me, or when you say something that can make it harder for me to get supports. The same system that tells you that saying someone isn’t disabled is a compliment is also at the same time telling people it is okay to say dehumanizing things about PWD, because we are other or aren’t “nice” or are all the things that you are not associating with us.

Neither does your good intentions  insulate us when we are in a position where we aren’t looking so “not disabled.” The gentleman’s insistence that I wasn’t like the kids his wife teaches didn’t stop me from having a shrieking sobbing meltdown in my county assistance office this week over something I couldn’t recall. In fact, his remarks fueled the same culture that I catch myself falling into by accident by thinking, “good thing I was the only one in that waiting area.” His intent doesn’t stop me from the horror that is finding myself thankful for the assistance office secretary not calling the cops or the ambulance on me, which is a real and present fear every time I get overwhelmed or frustrated with myself in public.

I should never have to feel thankful for people treating me like a human being. Not even when I am at my most incomprehensible impossible to communicate during states. Not even when I’m at my most obviously disabled points. I should never have to thank a stranger for allowing me to exist.

Your intentions don’t mean that you aren’t holding up a system that asks me to give thanks for these things. Intentions don’t mean your impact is mitigated, doesn’t relieve you from being implicated in a system that one day will say I’m not needy and the next that I’m too needy to be seen as fully human.

Don’t worry, I (and every person with disabilities who has been around long enough) know that you call us human, we’ve had you and so many others tell us all about your intent. But your intent and your actions just don’t line up, not really. I want to believe it when you respond to my concerns that you don’t think x bad thing about Autistics or about PWD or… But your actions tell me differently.

Your impact reminds me that all of this, all the things in our culture we are socialized with say that your intent makes you a good person. That your intent makes you more accepting and worthy of thanks than the general public. That of course your actions won’t perpetuate the group think that says those horrible things you say you’ll never say.

It also reminds me that you’ll still say them by accident, because those horrible things are a basic intrinsic thing in our culture that we have to watch for. That your privilege means that you won’t remember that the things you say about how unusual it is for me to be nice and Autistic are hurtful. That you don’t have to worry about how able is “normal” and disabled is “bad”. It means you’ll laugh at the joke in the men’s room about hand flappers, and that you won’t blink when you watch a movie where the murderer rocks to himself. (I watch those movies too, I’m a fan of horror and what not, but my goodness do. I. Blink.)

So no, I’m not thankful for your good intent. And it’s not that I’m not capable of being thankful.

I’ll save my gratitude for actions and impacts that help not harm. I’ll give thanks for the thousand tiny actions that are good, intentions or none.  Indeed, I am thankful every day for such little things, and some days for huge things.

I’ll find myself thankful when my mother opts to have a conversation with me via instant message even though we are in the same room. I’m thankful when someone helps me with a form or reminds me where I’m headed, regardless of if they know why I’m needing help. In the same assistance office where I melted down, I was thankful that my intensive case manager being on the ball meant my meltdown didn’t relapse over and over the rest of the day.

I’m thankful for having found community with my fellow Autistics and other PWDs. I’ll be thankful when we manage to balance a bunch of different food restrictions that sometimes contradict- after all, that is an accomplishment with or without intention or culture!

I’m still not going to be thankful for your good intentions. I’ll save that emotion for the good impacts.

_________

A quick note: I’m only posting this today because of all the “I’m thankful for” posts. If you are looking for something about Thanksgiving, I’d encourage you to do what Occupy Boston is doing in centering indigenous voices. “No to Thanksgiving” is an excellent history piece you ought to read. There’s a list of Indigenous tumblr-ers for you to follow, Blogs like Native Appropriations to read, Or check out the tags on other multi-topic blogs. Sciological images has a Race/ethnicity: American Indian/Aboriginals tag, for example.

Inside and Outside Safety

[Content warning: Mentions of violence towards PwD, both external and internal. Passing mention of the R-word and of a cat dying.]

“If you are silent about your pain, they’ll kill you and say you enjoyed it.”

 -Zora Neale Hurston

I think sometimes when we talk about “passing” versus visibility we forget what that really means, what it is really about. We forget that it means a choice between being safe in the out there instead of being safe in the in here.

It’s a process of making a difficult choice for some of us. Which will destroy us sooner- the violence that others do to us or the violence we do to ourselves? How long do we defend ourselves from the violence that other people send us before we end up destroying who we are inside? Can we live in a world where we can be safe in our own heads without endangering ourselves from the violence of others?

A number of people have written about what it is to internalize oppression- ableism in particular. There’s one phrase I’ve seen that always strikes me- “outposts in our heads.” The place I remember coming across it was at Amanda Bagg’s blog, when it was used- along with the Sally Kempton quote- as the title of a post. Outposts in Our Heads was a big deal for me when I first read it back in 2008. It helped me form into language the things I was noticing about my own experiences, my own terrors, my own damages.

When we internalize the messages that tell us we are unreliable narrators of our own stories, that we are “bad” and “wrong” when we exist as ourselves, it creates violence inside of us. It’s not the physical kind of course- though sometimes people do hurt themselves as a result of this “inside” violence. But that makes it no less violence, no less an attack on our beings.

The more I reflect on my own behavior and the writings of others the more I feel as though a lot of our passing comes from this violence that has been pressed inside of us. Our passing is  an expression, in part, of the thousand little insidious things we were taught.  To remind ourselves that we are wrong, that we are “slow.” To remind ourselves that we don’t count as humans unless we take these “lessons” to heart.

With those lessons is one that gets pointed to as the “reason” for them, why it is so “needful” for us to find indistinguishable. Why the parent I will sit next to in a meeting next week will tell me that they just want their kid to have a shot at pretending to be normal. The outside world is violent towards us when we don’t accept these things, sometimes in more obvious ways.

I don’t think we have to go far to “prove” them their theory on how unsafe it is for us. Neli Latson‘s arrest- Young, black, and Autistic Neli- is proof in an of itself, however much it is also tangled up in racism. The bullying of kids who rock and flap are constantly held up against the bullying of queer youth by some parents, the violence that both populations face sometimes used to outline how bad it is not to pass. Sometimes I even hear the statistics about how 70% of women with developmental disabilities experience rape and that is used as an example of why we shouldn’t be obviously disabled. (Sometimes I even hear this from people who would fiercely remind you that how a person dresses or what they drink doesn’t make them responsible for the violence done to them.)

These things are brought out time and again, these dangers of the world. And too often- particularly when it is our families rather than disabled people ourselves- the solution offered is to teach us to pass. To not behave or exist as we are. To make eye contact and don’t flap or rock in public or don’t jump at loud sounds.

The solutions offered to individuals too often aren’t to make it so police know what to expect from Autistics (as well as unknowing the stereotypes of race), to end bullying through truly inclusive practice, to teach people not to rape and sexually assault people.

We are told that in order to save ourselves from the violence out there we must do everything we can to look normal out there.

And when we do look normal out there, they pretend that no violence is being done to us. Too often, they forget the violence that they did or dismissed to make us this way. Too often, they will always dismiss that it left us with violence in our heads.

As time goes on I try to unlearn the violence that was taught to me. I try to uproot the strongholds that tell me how wrong and bad it is of me, how selfish, to want to be okay with myself. This process isn’t helped by living in a society that reaffirms that all the bad things are because I’m wrong, I’m deviant, I’m disabled and I dare to try not to hide from it.

In June, I attended the Allied Media Conference as a Co-track Coordinator of the Disability Justice Track with A’ishah of ResistDance. Admittedly there were huge chunks of things that were issues in the physical world- for example, some people not getting what “scent free” meant, or staff members forgetting that sharpies can be toxic for some folk, or how incredibly echoy and not sensory friendly having closing ceremony in McGregor was. But the biggest thing for me had nothing to do with my external environment.

It had everything to do with my internal one. I was working so hard at uprooting the ableism inside of me, and yet while I was there surrounded by movers and shakers and hopeful justice makers I found more. I spent a couple of hours one afternoon sitting in a corner, crying and rocking and holding my arms tight. My outside was safe enough- someone even gave me a tissue as they passed. But on my insides the violence I had worked so hard to uproot from my mind was taking over.

I was alone and unworthy and bad girl. Of course you are having a hard time, I thought, you are wrong at the most basic level.  Remembered directives of Stop Crying and This is for Attention isn’t it? and You are selfish for wanting to be safe and everyone knows that retards can’t lead.

I eventually got settled enough to move, to look for my mum in the Healing Justice Practice Space. When I got there, though, it was obvious in ways I couldn’t know that there was a violence happening inside of me to some of the healers. I had some tea, and Mariposa had me do medicine on my self by way of chalking protection at my wrists. It is protection from the elements of the outside that give power to the violence inside, she told me.

And I did come back to me, to knowing that I am worthy and human and deserving of existance. To knowing where those thoughts were pressed into me from. To knowing that it is a violence taught to me.

I won’t discount that the violence outside of me is painful. I can’t pretend that I wasn’t devastated when the neighbor shot my cat Tribble knowing that he was in training to be my therapy cat. I will never deny that there’s still a spot on my back that when pressed makes me panic, to think that my mother’s second (ex)husband is going to put me in prone restraint again. But I think that the most devestating is the ways that violence is pressed inside of me.

I’m tired of doing violence to myself inside of me to avoid the violence that could happen outside of me. I’m tired of having no safe place inside of me because someone might believe that the demonstrations of my disabled person-ness gives them license to grant violence to the external face of me. I don’t think it’s right to give in to demands that I pretend that passing doesn’t hurt me.

This afternoon, I’ll go shopping. At checkout, while I’ll smile at the register and answer questions from the check out person, chances are I won’t make eye contact. Chances are I’ll startle when someone shouts or drops something. Chances are I’ll flap in line, wander in a way someone else’s parent would characterize as aimless and pathological, cover my face or eyes or ears when things are “too much,” flinch when someone touches me in passing unexpectedly. I’ll stare and not be able to process a shelf display or two, and forget how much I need to get some bottled water because it looks like there’s so much stuff in the cart already.

And I will  be safe.

_________

This Post was inspired in part by “Dear ‘Autism Parents’” by Julia Bascom, as well as other writings of her’s at Just Stimming. I highly recommend going over there and reading more of her stuff. I also want to direct people to the writings of Amanda Forest Vivian at A Deeper Country whose writings have been helping to “percolate” these thoughts all summer.

This has been reprinted at Shift Journal.

Sometimes it feels like Nice is a Dirty Word.

Being polite is this really tricky thing for me.

On one hand, I know that I struggle with being polite, even when I mean to be. There’s lots of little things that even after ages of studying, I miss. And those little things end up having big consequences as to how I’m taken. I miss a signal to stop, I’m “over bearing;” I miss that I’m supposed to say something/contribute, and I’m “Unfriendly.”

As a kid, I would try (when brave enough) to mimic the “playful” teasing I observed between my peers, and miss that it had slipped over that vague line of playful. I was shocked and hurt to hear my mother mention my on occasion “bullying” kids who were trying to be my friends. But the rest of the time, I was too “shy,” too “drawn into my own world.” It seemed as though there was no way to reach a happy medium in between, the one where other kids would presumably like me.

I’ve gotten, I think, a little closer to a manageable compromise. I’ve decided against listening constantly and desperately to the coaching and pleading, and generally try to be nice, opting to withdraw rather than risk it.

There are exceptions, of course. I tend to have a highly developed sense of right and wrong, and sometimes there’s just a little too much *wrong* in the world. Then I seem to slip up.

Let me give you an example. Recently, I was visiting my Aunt in NYC. She married a guy who has done pretty well in contracting, and so yes, there’s a good bit of a class difference. In any case, we were having  conversation with my sister and step aunt, nd she started going on and on about how great “The Secret” was. She was recommending it to my sister.  After a while, I couldn’t handle it any more.

I stated that actually, a lot of people who are facing various oppression (Like classism, racism, or ableism around Mental Health Issues) find the culture around subscribing to The Secret to be very hurtful. Too often, people whose issues face against more than the white middle class abled “mainstream” are said to have not worked hard enough at it for the “Laws of Attraction” to have worked. The Secret in too many circles is used to both deny privilege and to blame oppressed peoples for their continued struggles.

That’s not to say that there aren’t people for whom it works and is mega helpful. But to hear it go un-critiqued when recommended to my sister- who like me comes from a different economic class and who has her own disabilities- was not something I could handle. I Had to say something.

I later found out that she thought I hated her, in part from this and in part because of not interacting otherwise as she expected. Which isn’t true- I love my aunt very much, I just get frustrated by what I see as obvious class differences and how they effect how we see the world.

In any case, I end up feeling as though I’m too mean.

Online, it’s a little bit different. Somehow, I feel as though I’m a little too nice compared to some of my friends and fellow advocates. Maybe it’s who I spend time with. I often feel like there’s so much of my conditioning from childhood of trying to fit in, to dodge some of the less than wonderful experiences of “treatment” that makes me try to be nice all the time. To educate instead of protecting my boundaries.

Most of the people I know in Social Justice circles know that it’s not an oppressed person’s duty or reason for being to educate those who hold privilege over them. It isn’t, for example, an Autistic’s (or other person with disabilities’) job to live as a “self narrating zoo exhibit” as Jim Sinclair would say. It is the oppressor’s duty to get educated, not the oppressed’s to educate.

But I cannot bring myself to not educate. Trying to establish boundaries like some of my friends have is something that leaves me feeling torn.  And I know that it is okay for me to educate people, but sometimes I worry it makes me seem too *nice* when compared to some of my friends. And I don’t mean nice in a kind person way. I mean nice in a too compliant way.

Nice in a way that would make people I love and respect look down on me as feeding into my own oppression. Or, perhaps, in a way that belies how deeply ableism has infiltrated my thinking. There’s a lot of things I keep stumbling across when I go to examine my thoughts that remind me how much of life as someone who- in my case- is an Autistic and has MH issues ends up being about compliance in order to survive.

How much of my desire to be kind is based on my beliefs, and how much is based on the feelings that I need to be “nice” in order to be worthy of surviving, of getting the supports I need?

I’m not going to stop being kind, or educating people.  I will admit I can get s little sharp- for me- on my tumblr, but that’s tumblr and a lot of it is reblogging other, sharper people’s comments. But I’m not going to deny that drawing the line between being kind and being compliant is difficult.

But then again, undoing the things we have internalized is never easy.

_____

Sorry if this isn’t at my usual standards. I just needed, for myself, to write this.

This has been republished at Shift Journal.

Writing Accessible Emails

Creating accessible organizing is challenging. I know that for me, text based communication is usually preferred. But there are major difficulties for a wide range of people with text.

The go to as far as access tends to be face-to-face meetings. A lot of orgs and advisories are facing defunding or under-funding because of budget issues. In many cases, this means that fewer face-to-face meetings are doable.

I recently had one of the advisories I’m involved with run into issues. I can’t do phone calls without support if I want to be actively involved. One person was having issues with too many emails. Face-to-face wasn’t in the budget. Another person’s Learning Disabilities made many emails very difficult.

In response, I sent an email with some suggestions for writing accessible emails. I’ve decided to share most of what I sent, as it seems to be an issue. I even had an incoming search term about making something accessible.

Basic tips for making emails accessible
  • The first one is that we often ask people to stay on topic in emails. If sending multiple emails is a issue, utilize bullet points. This allows for a visual separation of information.If bullet points don’t work, divide your email into sub headers that are bolded or underlined. This will create visual sections that let people organize the info better.
  • Use short words, and short sentences. It is said that brevity is the soul of wit. It’s also the soul of writing in accessible language. Using short sentences makes it easier to process. Using short words makes those sentences even easier to read. If you do need to use complicated words, either explain or provide a link to a definition.
  • If you use inline hyperlinks (links), don’t have the text be non-descriptive. This is doubly true when you deal with folks who use screen readers. Instead of using “here” or “at their site“, use the title of the article.For example, “On their site, NYLN has resources on things like Disability History and Disability Pride.” Or, “One good resource is Opera’s Guide to Accessisbility for Cognitive and Learning Disabilities.”
  • Use White Space. White Space is the space where you don’t have anything, like the space between paragraphs or at margins. This makes it easier for those with ADHD, ASDs, and so on to organize information and avoid distraction. When there is little white space, it is visually confusing for any number of people.
  • Formatting. Making sure that text lines aren’t too long is important. This isn’t so much an issue for email, unless you have a habit of writing in huge text and forcing people to scroll over. Make sure text is tall enough to be legible, but not so tall that it becomes an issue. This is usually between 12pt and 14pt font.
  • Short paragraphs that stay on topic. Paragraphs visually divide chunks of information. By writing relatively short paragraphs that are on topic, you make it easier for the reader to sort information.
  • Try to use spell check and grammar, and double check that spell check was right. The wrong words can make things extremely difficult to navigate for those with LDs.
  • Use image descriptions. Some people can’t see, but others have processing issues with images. Providing a basic description of images can be really helpful. And use images sparingly unless requested otherwise.
  • Create an environment that is welcoming. Don’t act defensive when someone asks for an accommodation. I know that we have some negative role models in this area, particularly in MH work. Some of us were even shamed and forcibly trained out of asking for our access needs to be met. Make sure you create an environment that isn’t modeled after that.One good way of doing this is to mention what *your* access needs are. For example, I might need certain information in chart or graph form. Don’t just say “Some people might need x” when you are talking about yourself if you can help it. We live in a world where alternative access needs are shamed enough without us internalizing that shame. Instead, add “for example, I have difficulties sorting out what information is important in long emails.”

These are based on a number of different access guides. Some of them are internal standards we use at Autism Women’s Network. Some of them are from things like the Opera Accessibility article linked above.

Working with multiple access needs

When working in groups with multiple access needs, one need doesn’t mean all others are invalid. It means we work together to find solutions.

For example, I’m generally not okay with phone calls. But for NYLN meetings we have someone who gets on google chat and who can say my comments for me while I listen. Listening can still sometimes be hard for me, but it’s enough that I can do it.

For people who can’t do face to face meetings, there are interfaces that can be used within reason. Making all our meetings in person isn’t accessible for many people financially.

For emails, if we write accessibly, we can create something doable.

ID, DD, and Cognitive Disabilities.

I’ve noticed a trend of using Intellectual Disability (ID), Developmental Disability (DD), and Cognitive Disability interchangeably. I find this extremely problematic, and wanted to suggest some guidelines as to what these terms mean

Developmental Disability– The Administration on Developmental Disabilities defines a DD as something that, starting before the age of 22, impairs or alter’s one’s ability to perform 3 or more certain major life activities listed on their page. They also state that it can be either physical or mental. (What is a Developmental Disability?) On a page that is designed for bureaucratic rather than accessible language, they elaborate that this means life-long disabilities that are “likely to continue indefinitely.” (OPD’s Factsheet on the Administration on Developmental Disabilities.)

What sort of Disabilities are included? While IDs aren’t uncommon, DDs include disabilities which might or might not have any ID co-morbidities () such as Cerebral Palsy and Autism Spectrum Disorders*.  There is a tendency to assume that if an individual has a DD they must have an ID, but this is a stereotype. It is built in part on the fact that some DDs effect the ability to communicate in a typical fashion, and so early work in the field assumed certain things about the intelligence of those with DDs as a whole.

Basically while a lot of people who fall under the DD label also have IDs, Having an ID isn’t a necessary part of having a DD.

Cognitive Disability– Cognitive Disabilities are not the same as Intellectual Disabilities, either. Cognition- while a part of intelligence**- is not exclusively intelligence. It also includes how we learn, and how we organize ideas.

I like how Opera defines Cognitive Disabilities:

These conditions affect a web user’s ability to perform one or more mental tasks. This includes problems with:

  • reading text
  • memory
  • problem solving
  • keeping focused (attention span)
  • computation (for example calculations)
  • non-verbal learning (for example difficulty with written materials)

(Opera’s Web Accessibility for Cognitive Disabilities and Learning Disorders.) Executive Functioning difficulties fall under this concept of Cognitive disabilities.

The most common alternate for this tends to be Learning Disabilities. I think it’s important to note that this includes the executive functioning issues in those with ADD/ADHD. Other examples of Cognitive Disabilities that aren’t always covered under IDs include Dyslexia, Dyscalculia, and even Traumatic Brain Injury (TBI). Additionally, TBI generally isn’t considered a DD. (And, on a personal note, is my sister’s Dx.)

Intellectual Disability– When one thinks of the old classification “Mental Retardation”*** it typically is referring to those with IDs, even though the old label was sometimes used for DDs.

The Equal Employment Opportunity Commission (EEOC) and the ARC give the definition of Intellectual Disability as

Intellectual disability is a below-average cognitive ability with three (3) characteristics:

  1. Intelligent quotient (or I.Q.) is between 70-75 or below
  2. Significant limitations in adaptive behaviors (the ability to adapt and carry on everyday life activities such as self-care, socializing, communicating, etc.)
  3. The onset of the disability occurs before age 18.

(The Arc, Intellectual Disability.)  While I have issues with the way we measure Intelligence/IQ, this seems to be the most workable definition.

Some examples of those who may or may not have Intellectual Disabilities are those with Down Syndrome, Fetal Alcohol Spectrum Disorders, or Fragile X syndrome. The ARC also mentions that an estimated half of the population with Intellectual Disabilities do not meet the definition for having Developmental Disabilities.

In Closing

While one can have Intellectual, Cognitive, and Developmental Disabilities at the same time, they are not interchangeable terms. It is possible to have one without any of the others, only two, or all three types of disabilities.

This is true even when you are looking at people with the same dx. Though most people with Down Syndrome have IDs, not all do.  While FASD awareness (and services?) are under SAMHSA, those with it might also have IDs. Someone With Cerebral Palsy has a DD, but might only be effected physically. Those with ADHD have cognitive disabilities but might not have either ID or DD, though they could also have both.

So, please, keep in mind the population that you are talking about. When you are talking about having Autistics share their stories on your site, ID isn’t really the best term, because you cut/erase a heavy percentage of Autistics that way. When looking at website accessibility remember: just because the content isn’t something you can make ID accessible, doesn’t mean you can’t make it more cognitively accessible.

______________________

* Note that the National Institutes on Health site article linked above is using the Current DSM’s definition. The new DSM coming out merges Asperger’s Syndrome and PDD-NOS, though they are linked out as separate in the article linked above.

** Note: The concept of intelligence is considered flawed by many people. I am using it because it is the terminology/lingo that is used in both the advocacy and service provider communities. Additionally, I have seen references that the Education system lumps cognitive disabilities under Learning Disabilities, and uses cognitive disability to mean Intellectual Disability. . . I’m not so familiar with Education from the educators end. Feel free to let me know more in the comments.

*** I oppose the use of the R-word, however some government sites and some state/local systems still refer to themselves as MR services. This is the reason why “Mental Retardation,” in quotes, is mentioned. My own county, in fact, still refers to it as “MR”, usually in the jumble of human services that locals call “MH/MR.”

Perils of (Buy?+) Copy+Paste

I have noticed something a little disturbing. Well, perhaps not terribly unusual- may actually be a standard in the world of publicists for all I know- but still disconcerting. What is this? The copying of another person’s article or release as framing for your own work.

I’m not talking necessarily plagiarism- oftentimes, the original writer is cited someplace, in a terribly unobtrusive way. Sometimes, the story was paid for from a news service.  Certainly not Plagiarism. And in the general population, it would be nothing.

But what I’m talking about isn’t just in the general public, general sphere. It’s used by the people who are supposed to be our defenders- without checking that the article or release’s approach is appropriate. It’s one thing to link to an article that has appeared elsewhere. I’ve done it, even when the article in question irritated me. But to run it under your letterhead, or to purchase it for distribution, is something else entirely.

Let me use an example that came through my inbox today:

I got a forward that was originally distributed by the people Organizing the Reinventing Quality Conference in Baltimore, Md this week. I was a bit upset by the approach that the article in the email used, so I started to check them out. From their website, they looked interesting. Lots of talking up about bringing in community living, self advocates, etc. (I’d love to hear from anyone who is better familiar with them and their reputation among self advocates; savannah@autismwomensnetwork.org)

But talking up isn’t unusual even in organizations that aren’t so supportive. It is a tough lesson to learn- one that might make an advocate, particularly one that has ASD related issues, bitter. But many organizations assume token language usage, alongside the more obvious issue of token representation. Not being sure what to think, I plugged the Lede into google.

I discovered a couple of things. It turned out to have been originally written for the Raleigh News & Observer. As a general news  source, the treatment in the article was typical, though frustrating. And it isn’t unheard of for companies the size of their owner, McClatchy, to sell distribution rights (McClatchy-Tribune).  All perfectly normal in the industry.

What bothers me is how many groups- and the sort of groups- have reprinted the article as is. Some do so in a way that clearly shows- albeit at the end of the article- that it was retrieved from a distributor, like Behavioral Health Central. NAMI- for all the issues I have with them- doesn’t even host the full article, and instead links the reader to the News-Observer’s site to read the full article. All of these have various levels of appropriateness in distributing this article. As much as it personally pains me, NAMI’s approach was the most appropriate.

But back to the email I received. This is how it started (where a byline might be):

Image shows the email, with the logo of a non-profit, followed by edit dates, the title of the article, the lede (with Raleigh in caps at the start) and no byline in the normal position

And here’s the bottom (where the full information is given on Behavioral Health Central):

Bottom of the email, with the last line of the article, followed by a name, a phone number, than an edited date and links to two PDFs, followed by the email client's buttons for "reply", "reply all", and "forward"

Someone who is familiar with journalism or publicity might think to google the lede. But my guess is that the majority of readers won’t- maybe their background is in social work, or maybe they are parents. I know the org that forwarded this to me has a primary family base.  To these “average” people, the language would appear to be authorized by the distributing organization.

My opinions on the article itself can be found in my last post. I disliked the perspective. But when a non-profit or other organization promotes an article- especially with such limited sourcing- counter to the interests of the population they claim to serve, there is an ethical problem.

Now, that was just one example- one that was specifically centered on a journalistic article that was distributed without proper sourcing.

But the problem is vaster than that. I have seen publicists copy over releases from government agencies to give context to the information their client is trying to get out. While giving context is an important step, that context needs to be in the language and perspective consistent with the organization you are representing. It is both lazy and unethical to refrain from copy editing the entirety of what you put out there to be consistent. And if a publicist were to submit something this way to a professor in college, they would most likely receive a reprimand.

I have a proposition. Why don’t we all take a moment to find some standards as to what we do and don’t put out there. Here are my suggestions:

1) When distributing an article, source clearly. Don’t cut out the original distributor. Use bylines in their customary place. I would even prefer that the sourcing be put in the by line. EX: “Michael Biesecker for the Raleigh News Observer.” But even putting the sourcing clearly at the end (EX: “Originally published in the Raleigh News Observer”) is at least consistent with Journalistic standards.

2) Use language consistent with the organizations/people we represent. While there does need to be a recognition of the language and views of the public, that doesn’t make it okay to use language inconsistent- or even opposed- to the organization or people. Instead, use it as a chance to promote their language and views, even if only subtly.

3) If creating context, don’t simply copy and paste someone else’s release for it. First of all, it’s lazy and bad work. Secondly, it limits your ability to promote who or what you you are supposed to. And occasionally, it might promote things that are *unwanted* instead.

In response to a journalistic approach

I read an article today, and it is spurring me to write two blog entries. This one addresses the article itself; the other talks more about Non-profit use of articles and releases written by others and some ethical issues surrounding that.

The article in question was published in the Raleigh News Observer under the title “Study: Four killings reported in rest homes“.  The lede is “In the past two years, at least four residents of North Carolina rest homes have been killed by fellow patients who had histories of severe mental illness and violence.

In all honesty, it’s a pretty standard approach used in journalism to use a “bloody” headline and/or lede to grab attention. But is it the right thing to do, especially when talking about an already vulnerable population? Does it not contribute to some of the problems of stigma we face today, not only for those with Mental Health disabilities, but in the larger disability community?

Most of my comments here won’t make sense unless you’ve read the article. Go on, click it, I’ll wait.

First off, the placement of people in nursing homes is actually a misappropriation of the implications of  the Olmstead decision. For the vast majority, the nursing home is *not* the least restrictive environment, and for some it is further inappropriate. The language in the article doesn’t seem to recognize that the warehousing of patients in nursing homes is exactly counter the opinion put forward by the courts.

This study further worries me, because the way it is presented starts out with wording that is extremely negative about people with MH disabilities, and might lead those who do not read the entire thing to assume that taking people *out* of institutions was wrong. The public might not be familiar with what exactly Olmstead was, or even the breadth of human rights protections the ADA affords.

Towards the end it makes comments on the horrible conditions. If you *do* know your history, you can recognize as rather identical to the sort of institutional care that we have been trying to get people out of, but few people know their institutional history.  It does not adequately suggest what the appropriate measures would be. It does not call for change, but instead allows the imagery to “fester” in the reader’s mind, where someone with less of a background in the issue might come up with some very frightening “solutions” indeed.

This perspective is very much one that favors the provider, as well as the social worker voice, over that of the consumer (remember, nursing home placement is generally speaking 18+), especially with the emphasis on homelessness as the only visible alternative (rather than showing examples of the underfunded and harder to get a spot in alternatives) and this treatment leaves me worried. While yes, it is true that many would currently end up in the streets, very little mention is given to the sorts of programs that are *supposed* to be the alternative, but are under funded.

How are we supposed to rise support for something to be appropriately funded if the information we give out doesn’t explain what exactly that *means*?

There’s another question here, too, when it comes to the professional view bias. It’s one that has been repeated over and over in the history of institutional placements of all sorts. Owners and superintendents have manipulated the public perception of various populations in order to increase their standing, power, and funding in the public. Just as a politician manages public perception of himself, professionals manage their and their clientèle’s perception. And so half-truths and misleading information about populations in institutions abounded.

While today, the Eugenics hot topic focuses on pre-natal testing, in the early 20th century the argument was focused on Sterilization. The idea was that those with developmental or intellectual disabilities were either too fertile, or unable to protect themselves from unwanted advances. With the rise of the concept of Social Darwinism in the late 1800’s, it became more and more worrisome that there was a possibility of so called “degenerates” reproducing.

At first, some superintendants supported the idea of sterilization privately. There was an initial reluctance to publicize this, though, for fear that they would lose funding for patients that, once un-sexed, might be returned to the community. Over time both the concept of the disabled as a public menace and issues of over-population in institutions grew. Eventually, in the face of a lack of space for larger and larger intakes, they shifted their public support to sterilization. Privately, their letters show that as they gained more public support for the procedure they grew doubtful about the actual usefulness outside of institutional control. *

Back to the lede and title.

The fact that it leads with “four killings” caused by “other patients” with no mention of the deplorable conditions until later on is extremely troublesome. It uses, instead of the entirety of the problem, something that PLAYS SPECIFICALLY on stigma the public holds towards people with MH disabilities. In fact, there is very little relevance to the subject of the article in the lede. Deplorable conditions should be “bloody”  enough to grab headlines, and that is the real focus of the article.

Even if you are a parent rather than an individual with MH disabilities, there needs to be a recognition that leading with this sort of stigma will *not* help in the long run. Instead, it will just perpetuate the stigma so that when someone who is a minor right now reaches age of majority, the stigma will still be as virulent as ever.

In my eyes, to ignore all of this in writing an article on this topic is negligent- not as a journalist, but as a human being.

*For more information about the history of the treatment of the Developmentally Disabled, I would recommend Trent’s “Inventing the Feeble Mind

Transgression and Inclusion

I was just at NYLN‘s Reap What You Sow Institute last weekend. It was amazing- I’d like to talk about that more at some other point. What I’d like to bring up instead is the Sins Invalid performance.

Sins Invalid is a performance group focusing on disability and sexuality, with a centering on People of color and queer artists. We had Leroy, Maria, and Antoine live- One of Antoine’s performances is available on Youtube, if you care to watch.  As for samples of Maria and Leroy’s works, Maria’s My Vagina Manifesto and Leroy’s Man to Man Talk.

The performance last saturday was amazing. But more than that, it was thought provoking- in a way transgressive as much effective art is. I was very moved, and did end up typing something up (couldn’t express and speak at the same time) and showing Maria and Leroy at different points later in the evening. It was in essence this:

Society does not make a space to see us, and no one has told us to make a parting in that fabric to emerge alive and proud in our community. I am made sad by the thought- the thought that so much beauty is denied because there has been no one to say “Come Come come forward and up. We are all community.” That inclusion and acceptance is so *transgressive*.

I think that to think- really think- about this is something challenging, but also transformative. Then, I think that that is kinda the point of transgressive art- to provoke a transformation of thought that might nto otherwise happen, or at least won’t happen so soon.

So think: What is it that makes inclusion and acceptance so transgressive? What is it that offends so much that we are made invisible, unseen in our local communities? Why?

And How can we make a transformation in our world- to create an artistic venture, if you will- that takes us from a transgression to fact?

Invisible Visible; Visible Invisible

I’m at the NYLN “Reap What You Sow” Institute right now. Being in a Disability space is so, so awesome and unbelievably energizing. The diversity here is INCREDIBLE. Too often, I attend or see conferences that ghettoize various aspects of or types of disability, or create a sense of separation between different types of disabilities.  Here, that sort of barrier is broken down- but it also makes me realize how much of a barrier we have out in the world in general.

One issue that struck me was visibility vs passing.

Sometimes, people’s disabilities are visible, but but obscures their person-hood and the fact that it is MORE than just their disability involved in their lives. When our disabilities are obvious, we become tokens, emblems in a logo (as some very wise women who can claim the concept said). We become the wheelchair user in the ADAPT logo, or the stereotype on our TV.

And while visibility is good, it is not helpful or useful- maybe not even good- if it denies our personhoods, our individuality. When we become a symbol rather than a person, a stereotype instead of an individual, and regardless of the other factors and aspects of identity we have our perceived identities wittled down to the most obvious factors of our lives.

Then there is Passing- when our disabilities are the sort that we can “look” normal. We pass as “normal” in a culture that oppresses us when we allow our true selves to show.

Before I go on, I want to bring in a little history (the geek in me insists) on the term “passing”. The most recognized form of passing is racial passing- there are many many stories out there of people who were of African American decent who- because of light skin or more European features- presented themselves as white. You can read some more about racial passing in an article at racematters.org.  There are other types of passing- Jews passing as Christians during the Inquisition and Holocaust,  queer people passing as straight, even people passing as a different political party. There’s a great article called “Privilege and Transphobia” that is very interesting, and has a lot of points that apply to lots of different types of passing.

(In case you need that simplified:) Passing means to take on the presentation of yourself as something you are not. Most times, people do this in order to avoid the oppressive factors in their communities.

I see this so, so much with those of us with invisible disabilities. We strive to achieve that old IEP goal of becoming “indistinguishable from [our]  peers”, to pretend “normalcy” in order to belong. We deny essential parts of ourselves in order to resemble ideals and stereotypes of our cultures. And society rewards us in various ways when we succeed- we get leadership roles, sit on committees, and are granted privilege. Even when we don’t quite pass, society grants us recognition by engaging us as their tokens, or by using us for Public Liaisons.

The privilege difference does create a conflict in our community.  Those who pass end up getting leadership positions and groupies (be they parents or peers), while those of us who don’t are still feared.

But the underlaying cause is the same, be we reviled or fetishized.  Those who revile us in our visible states don’t admire our relatively invisible ones- instead, they use us as a shield against their fear of the disabled.

I see a clear example at ASD or mental Health conferences a lot. A parent comes up to a presenter- or even me- and these words come out of their mouths: “Wow, you are such an inspiration/have endured so much!!!”

Now, I am no good at “getting” people in real time. I spend a long time processing it and building logical conclusions based on the info I have available, so it is totally possible that I have it wrong. But I believe that far too often, this is what they mean: “Wow, so I might not always feel revulsion when dealing with my son/if this happened to me, I might be able to pass or pretend it never happened!”

It might seem harsh. But if you say “her reasoning is that she just wants to hope her son gets better/be inspired” then you have to ask: why? Why is it so important to “get better”? Why do you find this inspiring? Too often, what I mentioned above seems to be the reason at the core.

I do not know what suggestions to make about this beyond the following:

If you are “invisible”, if you pass, take some time not to. Increase that time- be visible. don’t allow yourself to restrain who you are out of fear that someone will know that you are disabled. Don’t let people tell you that you must try to conform, that the only way you can go is to pass or to pursue indistinguishably. Work instead on what is important to you and your life and inde-and interdependence.