September 2008

Sun Mon Tue Wed Thu Fri Sat
  1 2 3 4 5 6
7 8 9 10 11 12 13
14 15 16 17 18 19 20
21 22 23 24 25 26 27
28 29 30        
My Photo

Sponsors

Kids' Current Favorites...

My Homeschool Log Blog

« Disability Awareness | Main | You People Are Keeping Me Up At Night »

May 01, 2008

Comments

AmericanFamily

This is a really great post. I have been watching Little People Big World and have found a lot of parallels between the ways that the parents (both little people) try to find role models for their little person son. There was also discussion in one episode of finding average height role models for their daughter. It is clear that even with little people parents, the little person son really gets a lot out of meeting other little people peers at Little People gatherings.

Penny

If I had a kid with obvious musical gifts, I'd want us to meet some kind, interesting musical adults for him to spend time with--because that's something I wouldn't really be able to share with him, myself. But I'm always amazed at the number of parents whose kids have autism spectrum diagnoses, or use wheelchairs, etc. etc., that don't know and don't WANT to know any adults with similar experiences.

Maybe I shouldn't be amazed--meeting an adult who's "still" autistic or using a wheelchair is probably discouraging if you're firmly in the cure mindset (or upsetting, if you've been told that your kid probably won't live to adulthood--doctors still say that stuff, which is another amazement). But still. Thanks for this post, and for outlining more of the reasons such reluctance is unwise.

Jesse the K

Word.

What a beautiful piece! The disability-industrial complex has a deep investment in inclusion without understanding the long-term implications. They've confused the disablism we face with the contexts in which its found, and think simply changing the context will magically make it all better.

Kathy

Great post. I am a special education teacher, parent of a child with a disability and a doctoral student researching teacher perceptions of inclusion. I am saving this post to re-read and reflect on when I get ready to write on disability theory.

EmilyElizabeth

Word is right!

This is a fantastic post and SUCH an important contribution BADD.

Thank you.

shannon

"And she should not have to be the token gimp whose only purpose is to 'educate others about diversity.'"

That's just how I feel about my kids and race. I think you're right that the thinking of parents of KWDs may be more like 70's transracial adoption. Unfortunately, I think a lot of transracial adopters are still in the colorblind mindset. The ones in our little Internet 'hood are kinda rare birds.

Laura in L.A.

Lisa, thank you. You always make me think.

Love to you and D. and your beautiful boys,

Laura

Ekie

I do remember doing actual work in the resource room, but I also remember spending an awful lot of time hanging out in there. I was supposed to be there for 1-2 periods a day in high school, but would also do things like eat lunch in there or hang out before school. The teachers were nicer, the people were nicer. They had art supplies, books, computers and quiet. It was, somewhat ironically, an incredibly inclusive environment at the time. (in retrospect it was not.) Few people talk fondly about resource rooms, but the people there I have found to be the salt of the earth. It really was like a social hour a lot of the time - and the teachers were also much more likely to gossip about themselves and other teachers in there, which being the incredibly nosy person I am, I loved. :D

Haben

Thanks for articulating these thoughts, I've known bits and pieces of this, so it was really nice to have it clearly laid out.

I'm deafblind and was bussed to a school that had a couple of blind kids and a resource room for them. The blind kids always ate lunch together in the resource room, and though occasionally someone would bring a sighted friend, it was usually just us and the special ed teacher in the background somewhere. Well, for a while in middle school our special ed teacher tried to help us socialize with the sighted kids more by denying us access to the resource room during lunch. I felt quite upset about this, and I suggested to the group that we all have lunch at a certain place. So for a while we would eat together in the cafeteria. I don't remember what happened next, but I remember sitting in a quiet part of the courtyard eating a sandwich on my own. Finding friends among sighted peers rarely happened at school, school was just a horrible environment for that. Our group didn't last long outside the resource room because the resource room was really the only thing that we had in common. For weeks I would have solitary lunches, and I hated the special ed teacher for denying us access to the resource room. The special ed teacher changed her mind after a few months and the blind students had lunch together in there again, but the room lost some of its charm since we had learned it could not always be our sanctuary.

I always enjoy reading your posts Lisa, thanks.

Sara

Wow, you have just about every kind of perspective on this, don't you? Fantastic of you to share it so thoughtfully and thoroughly. Thank you so much!

alice

Thank you for writing this. I think that the similarities that you point out for TRAs is really valuable as well - I'm going to try pointing out the parallels the next time someone doesn't understand what I'm talking about! (Of course, it's a moot point if the person doesn't get why mainstreaming KWDs in places where they're the token is problematic, but it's a start.

Aside from that, though, thank you for going into such detail with your experiences. It's really helped me work through some of the details in my head, and has given me a clearer picture of what you've gone through.

Janice

I think you said it best when you said that they need placed where it makes sense for them. I truely believe if there were more people with this mindset, KWD would thrive and learn. Love your blog!

Cindy Sue Causey

Great post..

In a similar vein, our People First chapters (SABEUSA.org) here in Georgia are trying to encourage growth of youth chapters across the state.. I wholeheartedly would love to see it happen as the existing adult chapters would provide *incredible* mentorship opportunities for youths making the (self-empowered) move from school settings into their communities..

Cyber hugs from North Georgia.. :)

Sarah

Lisa, I always enjoy your disability posts. Thanks for sharing your perspective. This post made me think about something I've been pondering while reading about disability issues on the web, and I'd be interested in your take if you ever have the time and inclination.

There's no doubt that many parents try to 'fix' their kid's disability so that they can be like everyone else, instead of accepting it as part of who they are. There's also no doubt that the culture of our society for a very long time alternated between trying to fix disabilities and just hiding them away from the world so they wouldn't inconvenience anyone. And so now there is a (totally understandable) backlash. There seems to be an increasing groundswell of adults with disabilities saying, "This is who I am, and I don't want to be anyone else. Stop trying to fix things that I think aren't wrong, just different."

Here's the question: where is the boundary between therapy and 'fixing'? Because one logical extension of that argument is to not give your friend Dana physical therapy and encourage her to use her walker some of the time (just because most people walk doesn't mean she needs to), and to not give an autistic child training in social skills, and to not give my 5 year old sister speech therapy so that she could say her Rs like all the other kids. It seems like some of the disability advocates out there are advocating that. And sometimes therapies can make kids feel different and 'broken' and less, but sometimes they can also provide valuable skills that increase the options available to the kid in ways that improve their lives. Is it just a matter of framing the therapy and explaining its purpose to the kid in such a way that they understand the goal is to provide them with skills (just like any other kid might take lessons in music or sports or whatever) rather than to 'fix' them? Obviously it makes a difference for any non-perfect kid (ie, all of them) to feel like their parents have reasonable expectations and are celebrating their successes rather than bemoaning their failures. Or are there some therapies that are beneficial while others are harmful? Or are they good up to a point but eventually become problematic?

I realize everyone is likely to have different opinions on this and to some extent the answer is different for every kid, but I'd still be curious what your thoughts are if you are willing to share.

Aarti Sahgal

And she should not have to be the token gimp whose only purpose is to 'educate others about diversity.'"

I am a minority in this country with a child with Down syndrome & work as Diversity coordinator.I fully connect with this and with everything else written. It has made me think and analyze a lot of issues. I am saving it to read again. Thank you.

Haben

Lisa,

I, too, would love to read a post on drawing the line between healing/fixing a person with a disability on the one hand, and proudly claiming acceptance as a different individual in a diverse world.

Jacqui

Hi Lisa,

This was truly a great post. And you are right but I do agree with the others about where the line starts and stops. My son, who has CP, does a passive therapy which we do to strengthen his smooth muscles. Am I trying to fix him? No. But I am trying to avoid him developing contractures at a later time. Is this wrong?

Jacqui

Melissa

Beautiful, articulate, intelligent, heartfelt post. I am, first and foremost, a single mom by choice to twin sons who both have CP. They are my life and my love. However, before them, and even now, I have always worked in the field of special ed. and have always chosen to work with kids with more significant impairments and disabilities. Right now, I teach kids with autism in an inner city school, and I constantly struggle to find the correct balance between the safety and fun of my room, and the need to include them in the rest of the school to provide them with those important experiences. Of course, they would all rather stay in my room, because they are understood, loved, and respected. Not so when they venture "out there".
Now that I am a mom of two kiddos with special needs, I see things so very differently. I want the best of everything for them and I pray that whatever their schooling brings (they are not yet 2, so I have a little time still) it will be helpful and not harmful. I have seen so much good and so much bad in the schools over the years, and I know I will be fiercely protective of them when the time comes.
Thanks for your post and your thoughts. Beautiful!

Christy

I'm now late for the writing group I facilitate, crying, and wiping snot on the hems of my pants but so thankful to have just read this post. You just articulated something I've circled but never put my finger on clearly and I will take your words with me as I learn to parent my son Elias who is legally blind with CP. He just turned four and uses a walker. Recently i told him we were doing therapy so that someday he may be able to walk without his walker and he said, "Want to walk with my walker," and i'm crying again because I don't want to teach him that there is anything wrong with disability. He can walk with his walker and read bold print and be enough. be whole. be beautiful. Thank you.

disillusioned

Although I agree with most everything expressed and said here--and was one of the few standing up in the schools I taught in fighting to help others see that the students with disabilities were not "wrong"--but fine....I did see though--especially since I was forced by a district and school into a self-contained classroom/mainstreaming situation...that as much as my students (with intellectual disabilities) loved to be with each other--they also loved to be with their regular education peers. The seemed to learn more, and do more when with their peers with and without disabilities, then with just their peers with disabilities. And, battling the constant mind-set of others, this assumption that "Well, aren't they more comfortable with people like them" is/was a constant problem. I often wanted to say "yes, they are very comfortable with people like them--you know, all of us humans in general!" I have to agree and disagree at the same time. As a special educator, I became part of the culture--perhaps on an outer circle--but somewhere in there--and learned much through viewing the discrimination they (and I) often experienced. But, throughout all of this (and to this day) I want others to realize that this culture is not something to fear...but should be embraced. I hope that by working hard to make sure my students were included with their regular education peers--that future adults will accept differences better than what occurs to this day--so that less discrimination occurs. Call me idealistic I suppose...but learning about cultures such as Deaf Culture did this for me...so I suppose I know personally that it is possible. But, I can say this---that as a former teacher in a self contained school...that only had students with significant disabilities...I left that school with a horrible pit and feeling in my stomach, knowing that what was occurring in that school was wrong. I dealt with that in the self-contained classroom too, but never as severely as seeing a couple hundred children isolated into a school, reinforcing the excuse that "well, they do better when they're all together with people like them". This was the excuse given for institutions for years...and I think the last thing we should desire is to go back to those days (which we're still not completely out of yet).

fridawrites

I'm sorry to just now be commenting on your Blogging Against Disablism post, since it's so thoughtful. Communities of people with disabilities are very important--I wish I had such as a kid rather than isolation from others and even shunning. I did have friends, but it would have been easier to navigate some difficulties with the support of others dealing with similar issues. I've finally found that through disability blogs--I don't know how I would have made it through the past year without them.

The comments to this entry are closed.