Daily Archives: May 20, 2007

Call for Action to Support Autistic Student Facing Severe Discrimination

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I am reposting this verbatim from a mailing list. As a friend just said, “That’s A) disgusting, B) deserves a lawsuit.”

Call for Immediate Action:

Below is a letter from a mother regarding an egregious example of mistreatment of her daughter, a member of our special needs community. Brigid, a girl with autism and a serious physical injury, will not be graduating with her class, and will lose out on a scholarship that she has earned to Cornell College because her school district has refused to accommodate her special needs!

We cannot let this stand. As individuals, family members and friends of specials needs, and people who believe in justice, we must immediately voice our support for Brigid and demand that she be given credit for her work and be allowed to graduate with her class! Our children with special needs within the public and private school system depend upon our taking a stand in situations like this, so that other children do not suffer what Brigid has been forced to endure.

Please join with me to demand justice for Brigid, who has worked so hard to appease a school system that has refused to provide her with appropriate accommodations, discriminated against her and publicly humiliated her! Below are the email addresses of officials of the Catholic Diocese of Portland, the Principal of Catherine McAuley High school where Brigid attended and Department of Education officials from the state of Maine.

Please inundate their email inboxes and telephone with a voice of support for Brigid. We must show her and the rest of the world that the special needs community supports its own and stands together against discrimination and abuse of this sort!

Here are the email addresses and phone numbers to contact:

Bill Wood, Parish Services Coordinator
Disability Services
bwood@ccmaine.org
1-877-621-8520

Bishop Richard Malone, Th.D.
Roman Catholic Diocese of Portland
1-207-773-6471
1-207-773-0182 – fax
http://www.portlanddiocese.net/contact_submit.php

Principal of Catherine McAuley Highschool
Mary Kelleher
sredwardmary@mcauleyhs.org
1-207-797-3802
1-207-797-3804 – fax

David Noble Stockford
Policy Director and Team Leader, Special Services
Maine Department of Education
david.stockford@maine.gov
1-207-624-6650
1-207-624-6651 – fax

Pam Rosen
Maine Advisory Council on Education of Children with Disabilities
Maine Department of Education
Pam.rosen@main.gov
1-207-624-6650
1-207-624-6651 – fax

Sincerely,
Rhonda J. Greenhaw Wood

WOARN – Wisconsin Organizing for Autism Rights Now

Here is the letter her mother wrote the Catholic Diocese of Portland:

Dear Mr. W,

I am contacting you because of your role in Disability Services for the Roman Catholic Diocese of Portland. My daughter has attended Catherine McAuley High school for 4 years. She is a wonderful young woman, who works very hard, and has suffered greatly from the misunderstandings, intolerance, and most importantly, from the code of silence surrounding disabilities at McAuley High School.

Brigid is a student with an Autism Spectrum Disorder. In addition, she sustained a closed head injury in March, 2005. This injury resulted in her spending the remainder of her sophomore year at the outpatient clinic of New England Rehabilitation Hospital. Brigid strove hard to regain lost skills and to relearn new skills. She completed the coursework for her sophomore year 2 days before her junior year started.

Since that time, Brigid has been absent from school for extended periods of time, due to a seizure disorder resulting from the closed head injury. She has also missed school due to unrelated surgeries. The Principal has always been informed of absences and concerns by Brigid’s physicians and myself. Brigid was, on several occasions, under physician’s orders to refrain from attending school.

Throughout this time, the Administration of the High School has consistently prevented staff from pertinent knowledge regarding Brigid’s absences. The school nurse was not given copies of physician’s notes, letters or recommendations. The Guidance staff was unaware of many challenges this child faces until the middle of this academic year.

As a result, Brigid has been repeatedly academically penalized for physician ordered absences. This is discrimination. She has been humiliated in public. She has been afforded few accommodations, and little, or no, understanding or compassion. Silence and withholding of information by the Administration have been tools of abuse.

The stress of this constant abuse to a young disabled girl led her to a suicide attempt this academic year. With full knowledge of this, the Administration made no changes in the code of silence. Teachers were left to believe that Brigid was truant, lazy, unwilling to work, when, in fact, the opposite was true. Brigid received a failing grade for an assignment involving small motor control, strength, and coordination.

She was unable to do this assignment to the teacher’s expectations because of a documented disability. Brigid received class participation grades of 0% for physician ordered absences. Work delayed due to seizures were graded as late assignments.

On her return to school following a month of seizures, Brigid completed 3 weeks of work within one week, while keeping up with her current assignments. She did this in order to participate in an extra curricular activity. My daughter made a Herculean effort to complete work, as if she were not disabled, and succeeded. Her reward was cruel. She was pulled off of the bus in front of her peers and informed that she may not attend the extracurricular activity she worked so hard for.

This is just one example.

This Spring, Brigid’s counselor and Sweetser Case management and her Neurologist determined that attending Catherine McAuley High School was adverse to Brigid’s health. Brigid continued to work at home on her assignments, I continued to deliver these to staff as I was able. Some staff were not notified that Brigid would not be in school or that assignments were to be delivered to the office for me to pick up. Consequently, the assignments were withheld.

It took several weeks for Brigid to regain the strength and courage to enter school again. Two weeks ago, the Principal informed Brigid’s counselor that this effort would ensure that Brigid could graduate with her class. With help, Brigid managed to attend school every day. She made a concentrated effort to complete all work to the best of her ability, communicate with staff, and do well on her tests.

Today was the last day of classes. Brigid had work completed. Quizzes, tests, final exams complete. Brigid turned in her essay for English class. Brigid had been one of the few students who had read the assigned text. She received one of the highest grades in the quiz about the book. She had a 30 minute conversation with the teacher about the book in early April. Following this conversation, the teacher reported at a meeting with Administration, myself, and Sweetser that Brigid knew the material well. She later requested that Brigid write an additional essay about the book.

Today, when Brigid gave this essay to the teacher, the teacher informed Brigid that she had decided not to accept the work. Brigid will receive a zero, and fail.

A similar occurrence took place last term. Although the Principal told myself, staff, and Brigid, that work outstanding (due to medical concerns) would be accepted until a stated date, one teacher capriciously decided to ignore the Principal’s decision. Brigid received a failing grade for doing all of her work very well and giving it to the teacher on time.

The Principal’s responses have been that teachers make their own decisions for their own classes and that this matter is not in her control.

Again, Brigid has learned that some people are not true to their word and that this is considered acceptable by an educational leader and a spiritual leader.

This most recent decision on the part of one staff member, if left unchecked, will compromise Brigid’s future. Brigid will be unable to attend Cornell College, or take advantage of their generous offer of a four year academic scholarship as well as financial aide.

The code of silence at McAuley which surrounds disabilities, combined with the lack of acceptance, accommodation, charity, or decency has damaged my daughter’s educational experience, spiritual experience, sense of trust, and quality of life.

I would have notified you of these egregious events during the past 3 years, but I did not know of the existence of your office and ministry. During the past year, I have notified the Bishop, as well as leaders of Catholic Education in Maine. I have attempted to work constructively with the Disability Rights Center, Sweetser Case Management, Family Crisis Services, physicians, social workers, counselors and the Administration of McAuley High School. My daughter has suffered. She has learned some very hard lessons of loss from the individuals entrusted with her spiritual, moral and academic education.

I do not know if you can help my daughter in any way. I appreciate the time you have taken to read this.

Respectfully,
Gayle Fitzpatrick

Give. Me. Time.

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I just had a conversation with a friend. I am completely in awe of the fact that I’ve had a conversation at all. It has been exceedingly difficult to carry on conversations with people lately.

I think people have some illusion in their heads that I am just like a non-disabled person in my head except that I type rather than talk. Certainly that’s an area in which I can pass to some extent at some points in time, because I usually type in the sorts of sentences that most people consider normal.

Guess what? The inside of my head is weird too. I may use the same language you do when I type, but I take a different route to get there. I identify strongly with people — whether they type, speak, both, or neither — whose internal routes look like mine. I don’t identify as much with people who might move vaguely like me and type to communicate but whose brains work in far more typical ways than mine does when it comes to the process of language and communication. This is a major flaw in the way people divide us up into speaking and non-speaking as if that’s the major difference between us (and for that matter as if those categories are fixed, well-defined, and static, I used to be a nominally “speaking person” for instance).

Also guess what? Treating a person equally is not the same as treating them identically. If you have to pretend my brain works just like yours in order to see me as a person, you have a problem. And you are creating a problem for me: people who do this will almost invariably be incapable of seeing the extreme inequality they are perpetuating between us. Making wheelchair users climb stairs is not “equality,” and neither is pretending my brain works like yours if it doesn’t. To do this sort of thing to someone is not a compliment, it’s a form of erasure, you’re ignoring who they are and you’re putting barriers in their path that don’t have to be there.

If you read aloud what I am saying as I am typing, I can’t communicate.

If you finish my sentences for me, I can’t communicate.

If you talk over me, I can’t communicate.

If you rush me, I can’t communicate.

If you interrupt every time I pause to come up with words, I can’t communicate.

And sometimes if you get really close and try to stare at the words I’m typing, I can’t communicate (that’s usually on a speech-output device, and it’s situation-dependent whether that’s a problem or not).

This is not about me being a control-freak who wants to dominate conversations. This is not about me stepping on your hierarchical toes wherever they might be. This is not about some sort of social hierarchy I’m trying to climb. This is about basic access to communication, and people like me are already working really hard, usually on a full-time basis, to communicate with people whose brains work in ways totally different than ours, we just want some reciprocity here.

If you are a non-disabled speaking person, then I can’t shut my ears and ignore you the same way you can shut your eyes or turn away and ignore what’s on the screen of my keyboard. I can’t turn the volume up high enough to shout over you if you decide to shout at me. This is an actual imbalance in power when it comes to communication situations and if you routinely abuse it I will rapidly lose respect for you.

And it takes me effort to come up with words. You might not see the effort. You might look at how fast I type and the sorts of words I use and claim that there is no effort. This does not erase it, and it does not erase what happens when you decide to throw wrenches into my ability to talk to you right and left on the assumption that I’m really not cognitively disabled and I can handle it. The ability to spew words on memorized topics also does not mean anything about other topics (or about the constancy of this ability).

My friend was talking about how when other people besides her talk to me, they usually seem impatient, like they can’t wait the extra few seconds or minutes it takes for me to get words out. She said they don’t seem to understand that there’s no rushing this stuff. I’ve seen people do the same thing to her. She has the same trouble with language I do (stemming, as she pointed out, from the same fairly important way of processing the world we share, so not something we see as a bad thing in and of itself) but she talks and people never give her time to come up with words. People act like she’s done, or should be done, the moment she pauses, just like they do with me. (And they don’t always notice my pauses because it’s all done in typing.)

At any rate, it was great to have a conversation with someone, but boy has it been hard to get anyone else to slow down long enough to have a real conversation these days. I have a number of medical problems going on, and I was not even able to coherently explain them to a doctor on the phone.

There are a number of things that need to be done, and when staff are here it’s hard to talk to them because they’re not as familiar as my friend and they are busy a lot of the time and it’s hard to get the time for a conversation even if they’re the ones who are better than average at talking to me. Lots of stuff isn’t getting done. Lots of communication is not happening. Which is scary because I depend on these people to do things for me and I can’t tell them what needs doing, and there’s nobody else around to do it but me.

Then there’s the fact that most people — in general — seem to have far less accurate receptive language than they think they do, so even if I communicate something in perfect and precise language, it gets garbled by the time it gets to whoever needs to know it. And that has been happening a lot too.

And the fact that often if I tell someone something, that may be the only time for months I can say it (even if it’s urgent), and need to rely on them to write it down or otherwise find a way to remember it because I might not be able to say it again for ages.

These communication problems don’t stop because a person acquires speech, typing, or both. Being able to form sentences on particular topics doesn’t mean what a lot of people think it means. My friend had to spend over half an hour with me today trying to work out what my body was doing wrong. Most people, including most medical professionals, aren’t willing to take that kind of time, but as she pointed out you can’t rush this kind of cognition. There’s a few things I do rapidly, but a lot of things I have a Barliman Butterbur orientation towards, I do it slowly but I can “see through a brick wall in time”.

And time is what most people seem totally unwilling to give me. It often seems in life in general (not just communication situations) like everyone is going around too fast to keep up with, and then getting mad that people like me can’t keep up, treating us like we’re just slowing them down on purpose to fulfill some weird internal need or something, or like we don’t belong there at all mucking up their perfect frenetically-paced world. If you push me for speed, you’ll get shutdown at best and a meltdown at worst, and either way the more pressure you put on for speed the slower I’ll do something. This is not defiance or passive aggression. It’s an inability to work under certain kinds of pressure. It’s a clogging of that little tiny hole at the front of my mind that I have to push vast amounts of information in and out through. There is no speeding up the rate at which I think and respond to things.

And if people would just take a tiny bit more time, these things would be much less of an issue.