Monday, February 23, 2009

Disability Prejudice: You Have to be Carefully Taught

This actor, Cerrie Burnell, is on a children's show in the UK called CBeebies and parents are protesting that her lack of an arm is "scaring the children."

My usual inclination would be to educate: my son went through all his life of Sunday school with a girl who has one hand and I grew up with a guy who had had one leg amputated when we were three and neither my son nor I have suffered any ill effect.

But this week I read this post at Chewing the Fat about and elderly woman's views about ignorance vs. meanness (and its ill effects--he is such a good writer, read it if you have a chance!) and I know the truth. These folks are not overcome by their lack of experience and information, they are overcome by their lack of tolerance/acceptance.

Rodgers and Hammerstein says it best:

We see you, we know what you're doing--you can do better than this!

Thursday, February 19, 2009

Celebu-WHAT???!!!! Are you KIDDING me??

Apparently this week marks the release of the new book Celebutard by NY Post writer Andrea Peyser. A look inside the book at Amazon reveals that the author constructed the title by putting together the words CELEbrity and deBUtante. She added the suffix "TARD" because she wanted to convey to the world her heartfelt appreciation and respect for celebs and debs and her inestimable esteem for people with developmental disabilities and their contributions to our culture.


She used the suffix "TARD" to convey her utter disdain for celebs and debs AND people with disabilities.

She intends not only to perpetuate the undeserved negative stereotypes that people with developmental disabilities contend with , but to profit from them.

I have to tell you, it makes me sick. Can you imagine if she'd used the final syllables of the "n-word" instead? Why didn't she, do you think??

I am curious what her friend Bill O'Reilly, who conceded on the air this week that his use of the "r-word" had been pretty tacky, will have to say...

You know what would be GREAT?? If Sarah Palin weighed in against this travesty...

Let's not wait for Bill-O or Sarah P. to do the right thing. Go to the Celebutard website, go down to the bottom to the contact us section and share your opinion. Also, if you happen to live where the author is appearing, show up and bring your "Words Hit Like a Fist" cards and T-shirts. Hers cannot be the only voice the country hears about disability.

Edited to add this idea someone shared: Leave a review on Amazon abut the book...

Also, it was announced this week by actor John C. McGinley (Dr. Cox on Scrubs) that March 31, 2009 will be the First Annual End the R-Word Day.

Dr. Cox, Andrea Peyser needs a housecall--and I'm not sure it can wait until 3/31.

Here's some food for thought .

Sunday, February 15, 2009

Sunday Links

Loved this.

Perplexed and worried about this. I will be writing more about this this week...

Think this may be the funniest thing I have ever read.

Horrified by this.

Ticked off about this.

Got a lot of enjoyment from this.

Excited by the potential of this.


Saturday, February 14, 2009

Paying it Forward

It is killing me not to find a theme song for this post, after all, it's Valentine's Day... But I have theme-songed you to death of late (YouTube is so addictive!!)

Today, in honor of the day of hearts I am doing something just for fun. On the weekends I like to read up on a bunch of blogs and one I follow is called The Prytz Family--they are from California and Jan is a photographer, Tai Chi teacher and very apparent lover of life.

A few weeks ago she played this game (and I got a lovely prize) and now I pass the game along to you.

Here's the way we play the game in Jan's own words:

Pay It Forward” is a book written by Catherine Ryan Hyde, released in 2000, but it's also an action plan within a work of fiction. Is it only fiction? I don't think so; it's a way of life.

"Be sure I have a way of contacting you. There is one further rule. Upon receipt of my "Pay It Forward", you must be willing to do one of your own on your blog, within one month.

"So, basic rules:
Leave a comment
Do your own Pay It Forward ( this means you must have a blog.)"

To play leave a comment on this post. On Thursday my daughter and I will put the comments in our red bowl of fun and pick out 3 and I will send along treats to each of you. My treat from Jan was a book, yours will be a small scrapbook/art journal and supplies (and you can pick anything you want for your own give-away.)

Happy Valentine's Day. Hope you get to do something fun and love-y today!

Friday, February 13, 2009

Mission (Im)Possible: A Challenge to Health Researchers

I am part of an advisory committee for the Institute for Innovative Transitions at the Strong Center for Developmental Disabilities. We had a presentation yesterday from The NYS Institute for Health Transition Training about the transition from pediatric to adult healthcare.

It was a really interesting meeting and they have done a lot of work. Probably the best part was this website (go check it out, I will wait!) where they take a Learn-See-Do approach for teaching medical personnel, parents and young adults with DD how to transition to adult care (the site is ADA accessible and Spanish translated too!). The site also has an amazing feature where a young adult can have a private page that he/she and their circle of support can maintain medical planning info. It’s not only available for working their plan, but could be accessed for hospital visits, etc. They are hoping other folks around the country will replicate this in their states as well.

There are also diagnostic grids and resources available on the site for physicians and they are implementing other physician-to-physician activities to inform and support the medical community as well. For example they have technology that is trolling the internet to find new articles on developmental disabilities which they then evaluate (and rank) and make available for physicians in the different topic areas. This technology originally had some sort of Defense Department application and now it is being put to work (repurposed as my green friends like to say!) to find health information for people with disabilities.

The big elephant in the room, of course was that most adult-care physicians do not accept Medicaid patients. This was an acknowledged issue, but they did not accept this as a barrier to their work. They modeled their approach after diabetes care—a chronic-care model that is accepted by healthcare and insurance providers alike. It turns out that some time ago researchers in Washington State did research that showed that if certain diabetes protocol were followed patients had better outcomes AND it saved the insurance companies money. Because of this research the best practices of diabetes care (including something called “academic detailing” where a subspecialist and a general physician can meet to discuss care needs for specific patients!) is billable with insurance companies.

Your mission, should you choose to accept it (and PLEASE do accept it!!!):

Do the same type of research that made best practices billable for diabetics, about Developmental Disability issues. If the value of excellent health care for people with disabilities—for themselves and for payors—could be demonstrated healthcare could become a reality and improve the lives of people around the country.

This tape will self destruct in 30 seconds....

Just Kidding!

Thursday, February 12, 2009

Disability Blog Carnival #53: Potluck, Is Up

You know I love a theme song!

Head over to River of Jordan to see the latest Blog Carnival. This month's theme was Pot Luck--in other words bloggists send in whatever was on their minds. And there was a lot on their minds it seems! I haven't read anything yet, but the topics and titles are very appetizing. I will be heading over for a snack in a little while--join me, won't you? (It's no fun dining alone!)

I brought two dishes to pass this time--one from this blog and one from my new blog which celebrates the graduates of New York State's Partners in Policymaking program. Hope you enjoy them.

And as far as those dirty dishes let me be the first to say "Nose Goes!!!" (LOL)

All puns fully intended!

(My dad sang the first verse of this song around the house when I was a kid--I didn't know about the other verses until today. Isn't the internet amazing??)

Tuesday, February 10, 2009

Try This Tuesday: Showers of Independence

I love a theme song!

Let's just say that all goals are not created equal. We have goals for our children that are temporary, showy or that prove eventually to be less important than we thought they would be when we thought them up. Achieving as much independence with hygiene as possible is not one of the silly ones--it is safer to be able to do private things more privately, it is terrific for self-esteem and it makes life easier to engineer for everyone. Granted, as much independence as possible looks different for every person with a disability, but this is an area where efforts are seldom wasted.

I look at hygiene as sort of a tonesetter kind of goal--are we into finding a comfortable routine for our family or do we have a continuous improvement mindset? (Neither of which is right or wrong--or necessarily permanent, they are just different approaches.) Our family has moved between these two mindsets as life has evolved, and will continue to do so, I am sure.

To work on hygiene goals you can take one of two approaches. You can start from the bottom up, write a plan that begins at the beginning with Step 1: Gather supplies and ends with Step 37: Put on your pajamas. Or you can begin with the routine you have and tweak it constantly until you have ARRIVED. Which approach you choose depends on your child and your family and what you are trying to teach.

With bathing we took the tweaking approach. We started many years ago by just handing my daughter the washcloth and having her wash her face and grew things from there.

Many things needed tweaking as we went:
-We moved her from showering in the tub to the shower stall when we realized stepping over the side of the tub really scared her.
-We went from sitting nearby and handing her a towel to dry her face 1000 times/shower to hanging one where she can reach it.
-We tried one of those shower mirrors to see if it helped her get the soap out of her hair (it didn't so it's gone...)
-We moved from cuing, to asking what's next, to not being in the room.
-We still have some tweaking to do--we just recently marked the safe temperature range on the faucet so she can set the water temp. herself (She knows to test the water with her hand, but I still kept looking for something we could teach her that would apply anywhere--couldn't figure that out so resorted to marking the faucet... will be tweaking again when a new idea comes along.)

And the beat goes on...

My friends whose kids have different disabilities are also increasing independence in highly individualized ways--and tweaking things as they go. My one friend has been teaching her son who doesn't move independently to direct the process--and she has had to modulate his approach so he doesn't drive his caregivers away (think about what a great lesson this is--management training! He will know how to be a boss when he's done!)

The big question is usually quality control and my rule of thumb is that most things missed today can be caught in tomorrow's shower... sometimes we send her back (we have done this with others of our children over the years as well)...

The only big rule is once they are independent with something try as hard as you can not to take it back. In other words, unless there is an emergency (and how many shower emergencies are there really??) we don't go back in... ever. This has meant rinsing shampoo out of her hair in the kitchen sink--not convenient, but better than taking away earned independence.

The book I recommended two weeks ago, Steps to Independence, is a great help for breaking tasks into steps and teaching them. Another great resource is the Disability Solutions newsletter. It is no longer being produced, but their archive is available on line and every issue is pure gold! Check out Volume 6, issue 1 talks about transition to adulthood and has lots of good advice.

Monday, February 09, 2009

More Info on the Stimulus Bill

Well, I don't know about anyone else, but I have been on pins and needles about the stimulus bill and whether the provisions that apply to disability are in or out or what...

Well, this came today from the ARC/UCP's Policy Center:

Senators Ben Nelson (D-NE), Susan Collins (R-ME), Arlen Specter (R-PA), and Joe Lieberman (I-CT) crafted a compromise substitute amendment for the American Recovery and Reinvestment Act (S.1). According to the Senate Democratic leadership, the substitute will garner sufficient Republican support to overcome a filibuster (or endless debate). The following disability-related program increases remain in the substitute bill:

* $87 billion over two years in the federal share of Medicaid spending (FMAP);
* $13 billion for IDEA state grant program;
* $500 million for the vocational rehabilitation state grant;
* $110 million for independent living;
* $500 million for IDEA Part C early intervention;
* $2.25 billion for the HOME (housing) program;
* $100 million for lead paint abatement;
* $400 million for the Social Services Block Grant (Title XX);
* $16.7 billion for a $300 one-time payment to Social Security beneficiaries, including people with disabilities and retirees, beneficiaries receiving Supplemental Security Income (SSI), and disabled veterans;
* $750 million for a new National Computer Center for the Social Security Administration (SSA); and
* $140 million for information technology for SSA.

The substitute eliminates funding to make Section 811 Supportive Housing units more energy efficient.

The Senate bill does not include an extension of moratoria on seven Medicaid regulations until July 1.

Of course, the story is nowhere near over, but I am happy to be living in less suspense. Suspense gets on my nerves after a while!

Friday, February 06, 2009

Senate Debates Disability Portions of Stimulus Bill

I am so frustrated right now I could scream. The economic stimulus bill is before the Senate as we speak. It's being picked apart and the things being cut out of it are the things that would make it possible for the 54.4 million people with disabilities in this country to be part of the engine for recovery, now and into the future.

Item #1: Vocational Rehab $$$. There is 50-70% unemployment in the disability population. ANY percentage of this population that goes to work can only help the country.

Item #2: Medicaid $$ and SSI $$. This pays for the services and the healthcare that adults with disabilities, veterans and elders need to live. Many of the people who get the care they need can then get jobs and contribute (see item #1.) And this money, of course, employs entire industries.

Item #3: IDEA funding. This is so important on so many fronts and it looks like it has been cut already. First of all, it is the tendency of school districts to see the educating of kids with disabilities as a nice thing they do when times are good. This attitude has led to sporadic compliance with education laws around the country with obvious consequences (see item #1.) In the immediate, IDEA funding employs educators and gives SOME incentive for schools to continue to support kids with disabilities in this lean time. And of course, what happens in the schools this year will determine the ability of people with disabilities to contribute to our economy when our children grow up. We can educate our kids now or our (non-disabled) kids can support them when they grow up...

I have been on the phones for the past 2 days. I got through to Sen. Gillibrand's office, but have not been able to reach Sen. Shumer's. I hope people are paying attention to their own senators' behaviors. If you do not like what you see your disability groups should make that very clear to them over the next months.

President Obama has given the disability community the opportunity of visibility, mentioning disability in his speeches on election night, at the foot of the Lincoln Memorial, and in weekly addresses, and more.

It is up to us to turn that visibility into a presence with credence and influence. Try to get through to your senators today (1-800-473-6711) and make appointments at their local offices next week to share yours and your groups' thoughts about disability policy.

Some helpful references:

Picture from here.

Tuesday, February 03, 2009

Try this Tuesday: About that IEP

Oh yes, it is that season again!!! Here are some tips I hope you find helpful as you prepare for your IEP meetings.

1. Organize your thoughts. Someone gave me this acronym and I use it as a checklist for myself: MAPS: Management needs, Academics, Physical needs, Social needs. I divide a big piece of paper in quarters and brainstorm each area, then organize what I come up with. Lots of folks have different systems, but that seems to work for me.

2. Organize your papers. It helps, trust me. Go see the possible placements, meet the people involved.

3. Know your rights. Your child is entitled to an education as a citizen—not IF he is toilet trained, or WHEN she becomes more independent. NOW. If they need support to be successful, they can have that support. Maintain perspective—it will cost your community far more if your child is not educated than it will cost to educate them. Hold your ground.

4. Practice phrasing everything in terms of needs. So instead of saying “we want Susie to have the limousine” say “Susie needs a vehicle roomy enough to…”

5. Deal with your feelings. Before the meeting. Vent to your friends, your mom, the people you work with and your advocate. New parents are dealing with many new feelings, seasoned parents are dealing with HISTORY—don’t go into the meeting full of pent-up emotions. You want to be able to think as clearly as possible. Some emotion makes everybody care—too much can derail the whole process.

6. Consider your negotiables and non-negotiables. Consider the possibility of many paths to the same outcome. I wanted an additional year of pre-school for my daughter—within limits I could be flexible about WHICH pre-school.

7. Consider the school’s point of view before your meeting. If you don’t know what their point of view is, ask them. You need to be able to address their concerns. And, if their ideas are vastly different from your views, you need time to get yourself into a “respectful, but not agreeing” mindset. That mindset is necessary for the team to function. A shocked yell of “WHAT the _______!!!!!” can really take a meeting down a wrong road…

8. Bring someone with you. Bring your spouse, a friend to take notes, your clergyperson (who can share how helpful your child is in Sunday school) or an advocate. It is so helpful to have another person who witnessed what went on. And they often add perspective to the meeting (make sure well ahead of the meeting that you and whoever is going with you are on the same page, of course.)

9. Plan several ways to explain your perspective. At one of my son’s meetings they wanted to discontinue all of my son’s accommodations because he wasn’t improving (he has a learning disability.) I was able to turn things around by pointing out that accommodations aren’t therapies, accommodations are like eyeglasses: glasses don’t fix people’s eyes, they just adjust eyesight, and people who wear them can’t function without them—ever…

10. Strategize. When there is some disagreement much of the team will be at the table geared up for a fight. They expect (and will goad you into) direct assaults, anger and negativity. If you can surprise them with a relentlessly positive perspective, humor, well placed questions,and relationship-building strategies amazing things can sometimes happen.

Good luck to us all! What else would anyone recommend?

Monday, February 02, 2009

Ableism: Snow or Sibling Revelry??

Scenario #1: A conversation during snow shoveling.

Me: “I am so sick of the cold and the snow.”

My Daughter: “Me too, let’s boycott!”

Can you picture us pulling on our shorts and sandals and marching on the weather bureau?

Of course you can’t!
• It’s ridiculous.
• It won’t help.
• The problem doesn’t warrant it (snow is one of the two problems in the world that actually will go away by itself if you ignore it long enough!)

Scenario #2: After dinner clean-up.

Three teenagers jostling and wrestling all around the kitchen getting in each other’s way and arguing. All three end up in one corner of the kitchen wrestling over the same dish towel, youngest child being both squished and stepped on.

Youngest sibling delicately whispers to the others, “Pardon me, elder siblings; I seem to be standing under your feet.”

Can you imagine ANY younger sibling using this tactic? Can you imagine any older siblings responding to it???

Of course you can’t!
• It’s ridiculous.
• It won’t work.
• The situation is urgent and those who hold the power are not going to give it up because of a whispered suggestion from their victim!

She needs impact NOW. She needs to yell to be noticed. And once she has their attention she needs an effective strategy. She could change the meaning of the situation (get everyone laughing); convince them that they are causing problems they don’t intend (like they are hurting her); or invoke higher power by calling “MOM” who will make the other two finish the job without her if they don’t stop (she may have other choices as well, but those are the 3 favorites!)

There are people in the disability community who believe that ableism is a Scenario #1 situation, That, like snow, it will go away if it is ignored.

I do not know why they believe this.

Throughout history when babies with disabilities were left on hillsides to die, treated as court jesters and more right up to legion 2009 examples (and it’s the 2nd of February, for cryin’ in the sink!):

• The official recognition that Washington is not accessible prompts the inaugural committee to tell people with disabilities to avoid the inauguration (rather than improving their plans….)
Chris Matthews in reporting on the inauguration draws disparaging inferences about wheelchairs and the status of people who use them (throwing in Dick Cheney to amplify the insult!)
Saturday Night Live attempts to lampoon Gov. David Paterson using ‘blindisms,’ not once, but twice (yep, they did the same stupid stuff again this weekend—in spite of being asked not to by the American Foundation for the Blind.
• 20 years after the ADA the country is not accessible, 35 years after education laws were passed (PL 94.142 which later became IDEA) education for kids with disabilities is still being debated….
New Hampshire is considering legislation that will categorize conditions where people are not dying as terminal to make it easier to assist them with suicide (and deny insurance, I’m sure.) Society believes better dead than disabled even though people who have the disabilities repeat and repeat and repeat that they like their lives…

I can add examples to this list daily--there are also daily advances, but they are not enough to cancel out the ableism.

Ableism is not going to go away on its own and it is keeping people with disabilities from education, jobs, community inclusion, and is even endangering their lives. We can’t ignore it and hope it will melt away. We need to get the world’s attention. We need to change the negative cultural narratives about disability, we need to convince the powers that be that they are creating outcomes they do not intend, and we need to engage the powerful on our behalf.

Ready. Get set. Go!!!!

(Note to Gov. Paterson: You need to develop some flamboyant mannerisms or start wearing bowties like Bill Nye the Science Guy or a scary hairpiece—or is it hairdo—like Blagojevich so that SNL has something to riff on. Clearly they are not going to come up with anything on their own!!)