Sarah Palin's Speech about "Special Needs"

Forgive me folks I am so far behind--there is an actual traffic jam of posts waiting to be written in my head... I am starting with this one because I commented a few times about the McCain-Palin Campaign's lack of a disability policy and now they have one.

A week ago Friday Sarah Palin spoke in Pittsburgh and outlined some actions that they will take regarding disability if elected. I heard that they also put their disability platform on their website, but haven't been able to find it.

I was very glad to hear Gov. Palin's remarks because to me it means that people with disabilities are being recognized as the viable minority they are. And I have been beside myself watching a national platform saying "special needs" every 3 words yet offering nothing... (I might have mentioned this before.)

Gov. Palin states they will support school vouchers/choice for children with disabilities and special education money will follow the child in states where state funds are portable. They will fully fund IDEA by re-prioritizing earmarks, strengthen the NIH for long term cures and to get better information out to parents and for early diagnosis. For teens and young adults they will extend the support of IDEA and rehab act extending to schools and colleges. Requiring results from education--freedom to work and live independently. They also want a welcoming culture.

She spoke about Special Needs Trusts and worries that Obama's tax increase will tax them. And advocated for more private-public partnerships.

Well, all that is left is whether you agree or disagree with these things. I have my concerns.

I don't agree with vouchers--private schools show very little inclination to accept kids with disabilities--the kids left in public schools will be the kids with disabilities and other needs,reversing all the benefits that inclusive education has wrought.

I worry about fully funding IDEA as an exception to their campaign's non-funding principles. In Obama's campaign disability issues are covered in the principle that everyone gets what they need. In McCain's it appears that "special needs children" will be given what other people need--this does not create a welcoming situation, it creates a scapegoat.

Further than this, if the Obama campaign intends to tax people making more than $200,000 how does this affect Special Needs Trusts at all? I don't know ANY folks who have so much in their trust that they are making >$200,000/year. None. But if they are, I say tax them!

And I know others love the phrase, but I hate the term "special needs." My husband needs a working car, 2 cell phones, a pretty impressive computer and strong coffee to be successful in what he does. My neighbor needs an electric wheelchair. Why are some things just needs and some things "special" needs???? Don't get it, don't like it. The principle exception does not work for me--it creates another "not us." Which to my way of thinking is ALWAYS dangerous.

But that's just me--go vote!

Disability Blog Carival, Ashley X, and Other News

The 33rd Disability Blog Carnival is up posted on Wheelie Catholic's blog. These carnivals have really good writing and perspectives on disability--check it out!

Next, consider contributing to the Blog Swarm March 30th to support ratification of the UN Convention on the Rights of Persons with Disabilities. Find out more here.

Also, Ashley X's parents have been interviewed on CNN. Their feelings about the surgeries they had performed on Ashley when she was 6 to stunt her growth have not changed. My opinions remain the same, further solidified by another year of following stories about the utter disregard in our world for the rights of people with disabilities.

(I have a picture idea, but I will have to take it later!)

FRIDA has some ideas about making sure the perspective of people with disabilities who feel endangered by Ashley X-type decisions are heard. Check out her post here.

Also, check out JFA for an action alert to get IDEA funded. It will take 2 phone calls to your senators' offices (they even have a link to find your senators' contact info.

Xenagogue--Disability Leadership That Works

I am just going to admit it, the letter x stinks as a writing prompt! I learned this word from my favorite (nearly) daily read, the blog 37 days by Patti Digh.

Xenagogue is an excellent word though—it means guide. This mode of leadership is one of the biggest strengths of the disability movement.

Throughout my daughter’s life it has been the parents of other children with disabilities and my friends with disabilities that have showed me the ropes—in so many ways.

The day after we got home from the hospital with our new little baby I placed a call to the National Down Syndrome Society. It was a mom that answered that phonecall and gave me the number of my local organization.

I then called our local group and it was a dad whose first word to me was “Congratulations!” (a lesson in itself!) By the end of our conversation he had given me the schedule for upcoming meetings, had asked if my daughter had been seen by cardiology yet, and had asked if I had been in contact with the folks in our county who administered Early Intervention. That call, that dad set us on the path we are still on today.

Parents taught me about Down syndrome, about which programs in town were good and which books I should read next. Parents taught me about the laws and advocacy skills I would need to help my daughter succeed. Parents and friends who have disabilities asked—and continue to ask—the questions that keep me and my family growing and learning.

Parents and self-advocates teach each other to access systems, find supports and develop creative ideas.

Few other folks understand the truly individualized nature of the lives we live. Systems often attempt to ‘bulk’ our kids, trying to assign our kids’ supports based on the system’s capacities or values, rather than on the reality of the individual child’s own circumstances.

Systems often try to implement a “Down syndrome plan” or an “autism plan” for example.

Parents, on the other hand, understand that Down syndrome (and any other diagnosis) has a group of symptoms, and that those symptoms play out differently in each person. While data received from the experiences of others contributes to building each child’s plan, so does the needs, strengths and situation of the actual child.

As a nurse I was prepared by my training for this.

I know many things about appendectomies, for example. I know about incisions, medications, complications, lab results, pulmonary hygiene etc. I must incorporate all of these things in the plan of care for a person who has had an appendectomy. Yet every care plan I make will be different because I must also adjust my plan according to the actual situation of my own patient.

If my patient is very old or very young, has heart disease or diabetes, is pregnant or is HIV positive, has a supportive family or no family at all, or any of a thousand other possible variables, my data-driven plan must be adjusted to be effective. Applying scientific knowledge in an individualized manner is what nurses do.

In the disability world it is usually parents and self-advocates that make this individualizing happen.

Self-advocates and parents “get it.”

We are great at talking to each other.

In a much lesser way parents and people with disabilities reach out to people who do not have disabilities to share the disability experience with them. When we take the role of guide with folks beyond the disability movement understanding grows.

Last weekend in Washington I went out to dinner with a bunch of people, with and without mobility disabilities. As our friends’ guided us from elevator to elevator through the subway system of DC we all learned lessons about accessibility that will be food for thought for a long time.

On a larger scale laws like IDEA and the ADA exist because people with disabilities and parents worked as guides with lawmakers to build recognition of the disability experience.

While the role of the superhero in disability leadership gets overplayed, the role of xenagogue has room to grow!

Accommodations Part II (The Sequel)

(I know this should be B day, but my conversations after yesterday’s posts made me realize that there is a pervasive perception that making accommodations for people with disabilities is “cheating.”)

Several years ago I was asked to a meeting at my son's school because his teachers wanted to discuss moving him into a special education classroom. I was completely flummoxed. His reading grades were over the top, his math grades were average, and he seemed to be progressing in all of his academics… I knew all about my son’s learning challenges, but every grade and score that I knew about indicated that he was succeeding at that point.

I looked across the table at the teacher and started asking questions.

“Are these reading scores accurate?”

“Yes,” she answered.

“The math scores?” “Science?” “Social studies?”

“Yes, yes, yes…”

Finally I asked, “Do you think he’s not learning?”

“Oh yes, he’s learning—when we ask him about anything we have taught, he knows all about it.”

Then what was the problem? I am sure I looked as confused as I felt.

After an uncomfortable pause the teacher blurted out, “He wouldn’t have such good grades without his accommodations—he has had them all year and he still needs them. He isn’t getting any better!”

Accommodations are a confusing and even disturbing concept for a lot of people. We live in a country where folks take great pride in making it on their own and many people interpret the word “fair” to mean “same.”

On top of this people with disabilities often receive a combination of therapies and accommodations blurring the differences between them. Therapies are designed improve a person’s ability to function. A person receiving therapy is expected to progress, hopefully to the point where they won’t need therapy any more.

Accommodations are intended to make it possible for the person to function now—without changing. People often refer to accommodations as ‘leveling the playing field.” It is a tricky concept.

Fortunately for me there was a teacher at the meeting who was wearing eyeglasses.

“Do you wear your glasses when you drive?” I asked.

She assured me that she did. Phew! Just the example I needed.

I went on to say that my son’s accommodations were like other people’s eyeglasses: glasses don’t make your eyesight any better; people don’t really expect to outgrow them; and if a person drives to work while wearing them, they haven’t cheated—even if they couldn’t drive without them.

Now taking an eye exam (where visual acuity is being measured) with glasses on would be wrong, but driving the car (where driving safely is what matters) while wearing glasses is just fine.

Accommodations can be provided for everyone (for example you can use larger print in your Power Point presentation to all to meet the needs of one or two audience members.) Accommodations can also be made just for an individual who needs it (in the same presentation you might provide large print handouts just to the individuals who need that while everyone else gets regular print.)

On top of this, accommodations are not as unusual as people tend to think: I use a calendar to accommodate my inability to memorize my schedule, a car to accommodate my inability to walk to work (I live too far away), a calculator to speed up my math, and my doctor's office calls to remind me of appointments. I know I am not the only one who uses these types of assistance to succeed. Accommodations are simply the things we all do to get things done.

The confusion that exists about accommodations for people with disabilities--and some prejudice about what sorts of folks SHOULD be able to participate and succeed in society--has necessitated the formation of laws like the Individuals with Disabilities Act, the Americans with Disabilities Act and others.

These laws, far from being cheating, make it possible for all people with skills, abilities, interests and gifts--who may also happen to have a disability diagnosis--to be full participants in society. Our gender, race, religion, ethnicity or sexual orientation should not be barriers to a full life in this country--neither should the diagnosis of a disability.