Disability awareness/rights in schools – how do you feel?

curmudgeoness

I read through most, but not all of this thread. Allow me to introduce myself, as it were:

I have a son with Tourette Syndrome and multiple co-morbid neurological disorders. I have homeschooled him since he was five years old, because 1) He was abused by his pre-school teachers, 2) public schools refuse (yes, refuse, and yes, I know it's illegal) to educate him, 3) private schools also are not interested in the challenge.

I pay -- let's just say a lot -- of property taxes, not because I live in a mansion, but because I live in New Jersey; in return for my contribution to our schools, I get to forgo my career and assume full responsibility for my son's education and therapy. So it goes.

This thread is a bit all over the place, but I will try to stay focused.

Tourette's is poorly understood by most people. I think that if you asked a random person what TS is, they would tell you it involves screaming obscenities, and that people with TS are insane. Organizations like the Tourette Syndrome Association are doing what they can to spread awareness. As I remind my son, he is fortunate that science and understanding of TS have advanced so much in recent decades, otherwise his life would be much bleaker than it now is.

Even though I am paying big bucks to stay home with my son, I am very much in favor of the teaching of disability awareness in schools. This need not be a big production, we do not need to make everyone feel bad for the disabled kid, etc. Let's just stick to the facts. Since my son's tics became severe, we give impromptu awareness sessions (lasting 2-5 minutes) when he joins a new activity; this makes life easier for him, and it also takes away a lot of the shock factor if and when he does begin ticcing. His big tics scare the crap out of people who do not know what is coming.

Eliminating the mystery and strangeness surrounding a disability, dispelling myths and half-truths, can provide an immeasurable benefit -- and really the effort involved is so small. In our experience, the public-school kids who encounter and interact with my son are patient and tolerant of his disabilities. They know what to expect, and they treat him like any other kid. So, as the parent of a child with disabilities, I have to say that the awareness education that is happening is making a big difference.

On the other hand, many (NOT all) of the homeschooled children we have met -- they are getting their information from their parents -- have been terribly cruel. They call my son "freak" and "retard." They -- and their parents -- treat my son as if he is contagious. We have witnessed some appalling behavior.

I also do not see why we cannot or should not include some information on the history of the disability rights movement as part of our history education. We study abolitionists, suffragettes, civil rights leaders, the birth of unions, Cesar Chavez; if the theme is people pushing for social change, then leaders in disability rights belong here, too.

IamMine

That was a great blog!

blondieblue227 wrote:

I know disabilities are more severe than others, but when I hear parents say I basically want my children secluded, here’s what runs thru my mind:
You aren’t going to live forever. How is your child going to cope once your gone?
Won’t be best to see how they cope with the real world when you’re still here to help?

Yup, my mother most certainly wasn't one of those... and I learned at a very young age how brutal the world was. :( How I had to do it myself at such a young age. (think of the Charles Ray movie where he fell and cried, but the mother refuses to come to his aide). And I hated her for it... especially when I saw other kids were being shielded and pampered by their parents. It didn't pay off in the long run....and ends up hurting us, the community, as a whole. So I did end up appreciating what she did for teaching me that. Not easy being the parent and having to watch your child going through difficult times and standing back.

blondieblue227 wrote:

Doctors need to stop playing God and stop making those general statements. It perpetuates the stereotype.
My dr. said I’d never talk.
Now everybody wishes I’d shut up!

Heh! In my case, one might regret taking advanced ASL courses!

blondieblue227 wrote:

People with disabilities CAN’T do everything a normal person can.
We do things in our own way and there’s nothing wrong with that.

That was an excellent way of putting it that way - if they'd say that to ALL kids, including the disabled, then it would maybe likely remove the "standard" acceptance of what is 'normal'? I dunno. But that was good.

blondieblue227 wrote:

why can’t people who are deaf use both and not be looked down upon? Use ASL and cochlear? Two ways to commutate, sounds good to me.

Oh shit... it gets really complicated, especially with the politics.

But in 'general', I agree. There is an unofficial organization who is doing that but it's not very popular and is not getting a lot of support. Both organizations on extreme ends do not really support it for obvious reasons.

More and more I have been seeing cochlear implants people, including kids, show side effects from CIs that has me concerned and they are often swept under the rug.

One lady showed me her CI (now removed) and it stuck out... it really affected her health, making her sick all the time. She wanted it out and would rather go back to using her old hearing aid. Doctor kept pushing her for replacement, but she kept saying no, please get it out. Dr said no.... ins won't do it, you pay out of pocket. She fought for over a year... won. There was a sluggishly feeling to her hole on the side of the head that made my hair stand out.

One woman lost her balance after the surgery... but she tolerates it and says it's worth it. I was like hmm, I don't know about that. Because I had lost balance for 2-3 months, only because I had one program set up way too loud and one day, out of curiousity, I turned it all the way up. Whoa... I had a bad case of headache that day and when I walked... it felt like getting off the elevator. And my CI doctor told me it wasn't the CI! :shock: Excuse me? In my 30+ years, I've never felt like this before...asshole.

A 3 year old deaf kid here in MI has both CIs and his mother is extremely upset because he is not walking normally. He got implanted before age 1 with the pressure from the hospital in Arizona and they told her that he'd be speaking and hearing like a normal kid with heavy AVT training. NO ASL, period. Nothing.

She moved up here and placed this kid at Michigan School for the Deaf... and he's picking up sign language and is developing a language. She's absolutely thrilled but pissed off at the doctors for not telling her all of other "options". She says she could have chosen to opt out of implanting her kid or at least included ASL.

So, it's all about options. I'd strongly recommend that ALL kids learn ASL and then CI as an option...it's just a tool.

But I agree, why not both if a kid is implanted. :P

ok, I"ll shut up about my group... and let others share theirs, I've hijacked enough!!!

Great blogging, Ivy! :thumbup:

blondieblue227

I respect what you shared with us curmudgeoness. I’m glad you posted.

But
Are you advocating kids being taught about each and every disability, or you for teaching the facts about the disability rights movement?

If there’s one helpful thing I’ve learned from this thread, there is a difference between the two.


PS. I as a disability right advocate go to my states general assembly to advocate that my state close intuitions. There is in home care services now.
One thing I have heard is parents want to keep their children in intuitions because they fear for their life. Bullying/hate crimes are out of control. (for all people really)
How sad it is to think that’s why parents intuitionalize their kids, because of other people’s behavior. There may be reasons to do that, but that should not be one of them.

blondieblue227

Gesh CI making me dizzy, don’t think I could handle that. Even if it allowed me to hear.

I’m angry that doctor didn’t tell the mom all the options! Poor kid.
These days you can research on the net until your eyeballs fall out!
See what I mean? Doctors think they’re God. He/she should’ve done his/her research.

IamMine

blondieblue227 wrote:

Gesh CI making me dizzy, don’t think I could handle that. Even if it allowed me to hear.

I’m angry that doctor didn’t tell the mom all the options! Poor kid.
These days you can research on the net until your eyeballs fall out!
See what I mean? Doctors think they’re God. He/she should’ve done his/her research.

LOL, I know... it makes me dizzy myself just thinking about that, even when I want another one on the other ear! :P I don't have any of those side effects, but still....they make it sound like it's a "small" stats/percentage, but I see them here and there which makes it very suspicious.

We are upset with that doctor...but it is pretty common, unfortunately. And to make the matters worse, many are members of the AGBell organization, a strong proponent of cochlear implants and its motto is “Talk for a Lifetime” :P

Some parents do research...but unfo, they themselves can be biased or the research is biased...blah blah blah.

It's captialism, baby.

blondieblue227

This is true. Every source is bias. But to know than as you’re researching helps too.

IamMine

- gonna post two latest information from one of our great disability rights activists, Cherese Jenks!

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A Place to Start and Thank You's!

Hello Alll!

I just HAVE to share some exciting news! I have discovered the Virginia Department for Deaf and Hard of Hearing went through great efforts to work with the Virginia Department of Education to develop a curriculum for children in grades 3-5. This curriculum has a focus on hearing impairment. This brings hope to our desire on having education on the history of the disability rights movement taught in our schools. This movement represents all people with disabilities. I cannot wait to review the curriculum they developed!

On our discussion boards I have posted information on the Grommet Island Beach Park and Playground for EveryBODY. This is going to be a fully accessible play area at beach located in Virginia Beach, VA. It will be the first of it's kind in the US. Several organizations got behind this project. I thought it would inspire these companies to continue to support projects like this if we, the citizens who benefit from full accessibility, would write thank you letters. I have posted the names and contact information of several sponsors. Please take a moment out of one day next week and write a letter to each of these companies thanking them for supporting projects with accessibility for everyBODY. It's always so easy to write a letter or inform a manager when something goes wrong. Wouldn't it be a wonderful place to live if we took the same time and care in acknowledging when things go right. This is a wonderful step in the right direction that needs to be applauded.

Finally, as of my login today, we are 172 members strong! Lets welcome all new members. Please be sure to stop by and introduce yourself on our wall and let us know why this cause is important to you. Be sure to share this link with everyBODY you know and ask them to make our voice one person stronger.
http://apps.facebook.com/causes/395159/ ... m=0fa0e110

Thank you all for your continued support and don't forget to make a positive public comment at your local SEAC meeting to support this effort!

Take Care!

Cherese



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The Process for Curriculum

Hello All!

I spoke to some of the publishers today and received a wealth of information. They develop text books based on what the state of Virginia identifies through The Standard of Learning and Curriculum Framework. Both of these documents are broken down by subject and can be found at

http://www.doe.virginia.gov/VDOE/Instruction/sol.html

The publishers suggest the best way to bring change is through public comment on these issues at the board meetings. Everytime they decide to make adjustments to curriculum they will develop the above documents and present them to the public for public comment. Once they receive public comments revisions will be made and then, they take it to the publishing companies to have the curriculum developed. Make sure you use the above link to get yourself familiar with these documents and to keep aware of when they are open for public comment. The framework document very easily identifies what is important to the state of Virginia. If you believe they missed something is important to the residents of Virginia please be sure to make public comment.

All states should have a similar process. Please contact your state to see what your process is and get the ball rolling. Rightfully, there is a lot of instruction on the Native American, African American and Women's movements. There is not a balanced focus on the disability rights movement. I know we all believe this needs to change.

Take Care!

Cherese Jenks

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Great news on teaching kids in grades 3-5 on deaf/hard of hearing in VA! I do need to write a thank you note next week after the holidays and also contact my locals to see what's being done, if any progress at all, in developing a curriculum on the history of the disability rights movement!

As of December 19th, It's up to 176 members for this cause! For those of you who are just catching up here, here's the link to the cause on FB and please spread that around!

Add the History of the Disability Rights Movement to Curriculum: http://apps.facebook.com/causes/395159?m=0fa0e110

Thanks so much, Blondie and Cherese!

blondieblue227

'Virginia Department for Deaf and Hard of Hearing'

i know that made you smile Mel.

IamMine

blondieblue227 wrote:

'Virginia Department for Deaf and Hard of Hearing'

i know that made you smile Mel.

You read my mind, Ivy! heh!

Heatherj43

Disabled kids do have rights at school. but the school don't always know that. I had to use a state advocate once for my son when he was in high school. The advocate asked for their written policy, which is mandatory, they didn't have one, nor ever did!
They had kicked my son out of school permanently at age 14. They can't do that. They said to the advocate, "oh, we didn't know he was only 14". WTF!! They had his records, knew what grade he was in, etc.
Its a shambles out there for disabled kids.

blondieblue227

Heatherj43 wrote:

Its a shambles out there for disabled kids.

It is.
Knowledge of rights is very important. A person should know rights that pertaining to them, and also other rights.
For example the ADA is there but I feel is not strong because people don’t know it. or worse yet, claim they didn’t realize it the law. It’s all right there in black and white!
This can’t make for a strong country.

I’m very blessed to have had parents and other adults ‘fight’ for my education. I went to a special needs preschool. They saw how smart I was and organized an aide to write for me, then BAM! I was in regular classes.
I think it may have been where the school system was near to too. Not in a big busy city, near a well known college.
Hillary Clinton is known for her no child left behind work. I think she started that in the early 80’s. I’m glad she fought hard.

While I’m glad I was mainstreamed, I sometimes wonder why.
Why spend so much resourses on me when society as a whole still has their barriers up towards me?
The kids I went to school with saw me everyday. They were used to me. I was shell shocked when I met the real world. it feels like such a waste in some ways....me in public school.

So include disability rights in schools. Maybe then people with disabilities won’t be looked at as alien when they go out on their own after graduating school.

Jeanwah

blondieblue227 wrote:

Heatherj43 wrote:

Its a shambles out there for disabled kids.

It is.
Knowledge of rights is very important. A person should know rights that pertaining to them, and also other rights.

I wish it was easier to know and stay in the know as to the law and my daughter's rights. School's are admittedly stupid about the law for any child with special needs, and until advocates remind them of the law, they carry on like they can do what they want. I just feel a bit in the dark as to what I can and can't demand for.

blondieblue227

Maybe you can catch up on the law pertaining to disability and school at your local independent living center. Click here to find yours: http://www.ilru.org/html/publications/d ... index.html

When you’re not an expert there’s always somebody around that is to ask!

Jeanwah wrote:

and until advocates remind them of the law, they carry on like they can do what they want.

i hate people that ingore the law! :x
in my opinion the disabled community is way too passive when it comes to that.
I want people with disabilities to riot in the street! And it ain’t happening.

IamMine

blondieblue227 wrote:

i hate people that ingore the law! :x
in my opinion the disabled community is way too passive when it comes to that.

It's holidays, honey....don't get me f**king pissed off!!!

And it's not an opinion, it's a fact. :x

I know I know... ((hugs))

I'll reply more later.... good discussion/information here... keep it up!

blondieblue227

hehehe
replace that with:

**thoughts of sugar plums, sugar plums dancing in your head**

blondieblue227

no need to sign in or up to sign this:

Add History of the Disability Rights Movement to School Curriculum Petition
to be presented to the US Department of Education
http://www.gopetition.com/online/33286.html

I agree this is necessary. People with disabilities are the largest minority group. Disability does not discriminate although, people with disabilities are often discriminated against. An education of disability history and rights would be befeficial to society.

IamMine

signed up!

thanks!

i will find an article that i think others will find interesting and learn from.... i gotta look for it first! arggh..... local disabled person fighting against the university for denying him to live on the campus because of his disability! jeeez.

blondieblue227

not surprised.
i hear about that from time to time.
or something like the dorms aren't accessible etc.

IamMine

I couldn't find it... someone must have threw away the papers around here. :(

But, I googled and found a similar story posted on npr:

http://www.npr.org/templates/story/stor ... =121998657

Intellectually Disabled Student Wins Dorm Suit

by Joseph Shapiro
December 29, 2009


Micah Fialka-Feldman attends Oakland University, one of many schools and community colleges that are setting up programs for students with Down syndrome.

Here's one reason Micah Fialka-Feldman wants to live on his college campus, instead of remaining at home with his parents: To get to college in the morning, he takes the public bus near his home, then transfers to a second bus. The trip takes about two hours.

Fialka-Feldman, 24, attends classes at Oakland University, as part of a program for students like him, with intellectual disabilities. The campus is about 20 miles from where he lives with his parents in Huntington Woods, Mich.

A few years ago, Fialka-Feldman helped his younger sister Emma move into her dorm room when she went off to college at Mount Holyoke. It gave him another reason to want to live on campus: He thought he was missing out on an important part of college life. But his school said because he was in a special program and not a full-time student, he couldn't live on campus.

So Micah sued.

Early yesterday morning, his cell phone rang. It was his lawyer with the news: He had won. "I'm happy and I'm proud," say Fialka-Feldman.

A U.S. District Court judge in Michigan ruled that Oakland University had discriminated against Fialka-Feldman. The new school term starts Tuesday. And Fialka-Feldman says he hopes to move into his new dorm room by Sunday. He's got his computer, his radio and his bedding ready. He's got the posters he wants to put on the wall, including ones with quotes from civil rights leaders. One says: "A community that excludes one member is not a community at all."

To live on campus, he says, "means I would have the full college life and ... I could go to Friday night things in the dorm, like Friday night activities like a film night or like a basketball game and going out with friends."

His father, Rich Feldman, adds: "The judge's decision is a wonderful victory for Micah's dream to live in the dorm and a victory for so many other students and folks with cognitive disabilities. Now it's their right to be fully included in the college dormitory experience."

A spokesman for the university said officials there have not had time to evaluate the decision. The school can appeal.

It's pretty common these days for kids with intellectual disabilities like Down syndrome to go to their neighborhood schools and to be mainstreamed with all the other kids. And when these disabled students finish high school, they often want to go to college. In recent years, scores of community colleges and universities have opened special programs and invited students with intellectual disabilities to enroll. Oakland University has been a pioneer in opening up to these students. But the colleges can't always keep up with the rising expectations of disabled students and their parents.

Fialka-Feldman takes regular classes, and students act as tutors to help him follow along in class and keep up with his homework.

He has taken classes at Oakland since 2003 and the new term will be his last on campus. "I'm taking a class on public speaking. And a class on persuasion," he says.

He's already been pretty good at persuasion. In the course of fighting this case, he has spoken twice to the school's board of trustees, and he pressed his case in court. The university's study government voted to support Fialka-Feldman's right to live on campus, and the student body president, Kristin Dayag, was at his side at his court hearing earlier this month.

"Micah has really found his voice," says his mother, Janice Fialka. She remembers when Micah was 2 or 3, and still didn't speak. "I remember vividly asking the speech therapist, do you think that Micah will ever talk. And she hesitated. And that hesitation, which was probably only four seconds, felt like a lifetime," says Fialka, a social worker who now is a speaker on disability issues. "And basically she was saying, 'We don't know.' And now he's speaking in front of all kinds of people. So this is quite a journey of surprise, and the importance of believing that every person has a gift and should be supported in their dreams."

A generation ago, parents couldn't dream for their kids with disabilities. Before the 1975 special education law, public schools weren't even required to teach them — and about 1 million then didn't get any education at all.

Even today, lots of these kids aren't capable of going to college — and for many of them the future remains bleak.

But Paul Marchand, with the advocacy group The Arc, says parents now have higher expectations. "Parents want the best for their kids. They want their kids to get a job; they want their kids to be as independent as possible. They want society to accept them. They want their kids to be as typical as all the other kids of their age, including going to a college."

Last year, Congress passed legislation that for the first time makes it possible for people with intellectual disabilities to get federal college loans — even if they're not in a full-time program.

blondieblue227

that was a great article. thanks for posting it!

"A community that excludes one member is not a community at all."
damn fine quote!

by brother's name is micah too. as a kid people would think i was saying michael. no, micah with an A, it's in the bible. i would say. :roll:

i love to hear stories like this, it means people with disabilities are getting out there and not staying at home. the more 'we' get out and say, 'here i am make room!' the better it'll be for all people with disabilities.