Monday, November 23, 2009

Advocacy is a Lifestyle

My kids have a friend who has trouble with anger management. When things are fine with this kid, they're fine. But when he gets angry, he loses control--and this is a serious problem.

Not too long ago my daughter told me that this young man was no longer going to have this problem. He had decided. From now on, no blow-ups. My kids were very upset when I didn't seem convinced.

"You just don't believe in him!" they said.

"Actually I do," I replied, "but I don't believe in his method."

My kids were mad, but finally asked what I meant. I made an analogy (I'm like that!) I asked them if they thought I could bench-press 200 pounds... they of course said no and rolled their eyes.

"But what if I tell you that I have made up my mind that from now on I would be able to??? Now can I?"

"Ummmm, no."

Of course, there IS a way I could become able to lift heavy weights, but willpower alone won't do it.

If I want to be a weightlifter I need to have a habit of daily lifting--starting with the small weights, and this guy needs to start a habit of dealing with frustrations--also starting with the small ones. (And I do believe he can do it!)

Well, some people approach disability advocacy the same way this young man wants to manage his emotions.

These folks see "ADVOCACY" as a specific set of tools and a linear process that a person implements only during certain (bad) events.

They believe that advocacy begins and ends when a problem arises. They look up a bunch of laws, march in, beat the opponents with a stack of regs, and walk away. They don't like advocacy because battles are painful and draining. While they succeed at punching a hole in the armor of entrenched systems, it results in a lot of turmoil.

While I believe in full-blown legal advocacy when the situation calls for it (and have fully used it when necessary)I also believe strongly in advocacy as a daily building process.

I hold the belief that disability is fine and does nothing to diminish a person's value or rights.

I assert this belief in big and small ways every day, and my little relationship-building-while-I-advocate steps are every bit as important to my child's success as anything that was ever written in a lawbook.

If I am effective sometimes I can prevent the big battle (without capitulating either,) And when I must have the big battle it's these smaller, more connective efforts that help the battle-scarred team become functional...

It's almost impossible to succeed by just forcing a system to do what you say and walking away.

Getting to know your school's systems (can't just stop at the PTO, I have found!), engaging in your neighborhood, speaking up in the check-out line, writing letters, fostering relationships, correcting misinformation, writing e-mails, helping people understand your child or yourself, blogging, nurturing relationships with other people with disabilities and their families (even when there is no trouble), and more, all count.

Each daily effort not only makes you a stronger advocate it strengthens your child and their position in the world.

Picture from here.

Saturday, November 21, 2009

Curing Down Syndrome?

This is a picture of my daughter after her new haircut--she had enough cut off to make a Locks of Love donation.

By now I am sure you have heard the news about the Mouse Study on Down Syndrome.

Actually, Dr. William Mobley spoke about this study at the National Down Syndrome Congress Conference last summer in Sacramento. Dr. Mobley gave a really clear explanation of the study and, probably because he was speaking to families, introduced the researchers who were working on the study.

The science is fascinating... The ramifications--to me anyway--are unclear.

So, will we be medicating our daughter???

Not anytime soon.

I REALLY do not believe in taking new medications--especially new medications based on new science. After all, Hormone Replacement Therapy, Fen-Phen and Thalidomide all seemed like good ideas at the time.

I will, of course, make exceptions when something is life-threatening, but a cognitive delay simply isn't.

And Alzheimers? Not an issue for another 30 years or more (and it's only a risk factor.) By then, Alzheimer's may well be cured for everyone--this study may well point the way.

So we will wait.

This may present some new and interesting opportunities, time will tell.

But there are a few things this is NOT:


Cancer needs a cure. Down syndrome? Not so much.


One of my friends has already been berated and labelled irresponsible and negligent by another parent for expressing her belief that medicine does not hold the answers for her son.

Negligent and irresponsible for having a different point of view about a medication that does not even exist yet???


One woman who really wants me to medicate Jennifer won't immunize her own son...

Yet I'm not calling her names...

Rein it in, parents! LEARN from your experience of having a child with a difference. Diversity and choice are good. And, it's disrespect (far more than any medical condition)that turns a mere diagnosis into a "handicap."


I fear that the implication that we'll just eliminate differences like disability rather than accept, adjust to or welcome them is not making the world better--for any of us.


For somethng truly beautiful, read this.

Thursday, November 19, 2009

Don't Dis Ability

Back a few years ago, B.B. (Before Blogging!), I was chatting with an acquaintance who was passionate about AIDS/HIV issues. She told me about this thing called blogging and that she was thinking about starting one. After our conversation I went home and set myself up to blog too.

I ran into this woman recently and asked her how her blog was going. She told me she had never actually started one.

Turned out that she had gone home after our conversation and talked the whole thing over with her husband (a web designer.) He had told her that she really needed a website before she started a blog, and before she could have a website she would need to be competent with HTML, and she would need a marketing plan and several other skills and THEN she could write a blog.

Her hubby had told her that YES, she was a pretty good writer, but writing is "just the tip of the iceberg."

She did try her hand at learning some of the HTML stuff, but found it complicated and uninteresting so she had stopped.

So, yesterday I wrote my 200th post and she didn't--despite the fact that I also only had the "splinter skill" of paragraph construction starting out. (No, I did NOT mention this to her!)

The difference is that I VALUED my splinter skill and looked for ways to turn it into something, rather than DEVALUING it because it didn't come in a package with every other skill known to humankind.

And the fact is I have learned several new computer skills from blogging... way more than I would have without it.

How many valuable and exciting things are nipped in the bud by this sort of de-valuing?

Lots. For everyone, I'm afraid. More, if for those with a disability.

When my son was younger there was someone in every team meeting I ever attended who wanted to exempt themselves from dealing with him, or deny him opportunities--in spite of his considerable language-based skills--because of the things he could not manage.

I spent years taking the skills the school labelled as "splinter skills" (and therefore meaningless) and re-framing them as "bridging skills."

I was constantly pointing out that things like language skills, which didn't interest his math teachers, could be used to improve his math skills...

The same with my daughter. She has great decoding skills and comprehension lags, so she isn't actually reading, according to some folks.

Yet, I find that when I am listening to her read and her understanding derails, if I hear her mention something like a character's purse, for example, I can draw a purse for her (adding a visual to her de-coding) and she will orient immediately to what she is reading. Her 'meaningless' splinter skills are the bridge to comprehension.

My friend's son loves to 'show off' according to his team. If his language skills were stronger they would call it 'performing.' My friend, on the other hand, works to use his love of an audience combined with his strong visual skills to insert story elements into his routines... thus turning his 'showing-off' into communication or story-telling.

Another friend, whose son is not diagnosed with a disability "has such great ideas, but he's so immature," according to his school. First of all, he is 17--of course he's immature! But wouldn't implementing one of his ideas be a great way to increase skills and maturity?

Reject the rejection! Embrace yours and your kids' skills--make bridges of those splinters--and see where they will take you!

Picture from here.

Wednesday, November 18, 2009

Post # 200

OK, I just have to get this post over with. I have put so much pressure on myself that I can't post at all because my 200th post should be SPECIAL, don't-ya know?

Forget it! I can't be that special. So here is a picture taken after my son's play this weekend.

This costume kills me. All weekend long I told him he reminded me of a turtle... so I found this picture of the turtle I meant:

He looked at it and said "Duck and Cover!" just like they did in the movie.

He's seen the movie.

In Social Studies.

Yes, my childhood is now being taught in history...

This is just wrong.

(Wikipedia says this movie was produced in 1951--I was not alive then, yet I remember seeing this cartoon as a child... strange.)

A couple of other bloggers have celebrated blogglestones recently. Congrats to Terena at Gravity Check who celebrated 111 posts this week, and to Louise at Output, Comprehension and Visualization who is celebrating her 1st!

Picture from here.

Saturday, November 14, 2009

My Hopes for Glee

I have such a mixed bag of feelings about the TV show Glee... My two older kids have always been vocal music-theater-show choir folks, or La-La's as they are called 'round here (the instrumental musicians are called Band-o's, fyi.) They love the show. They love the music and the mash-ups (where they blend 2 unrelated songs & styles into one performance), they love the dance and they LOVE the drama.

I have gotten into watching it with them. The music and dancing are great and the stories have led to lots of conversation.

This week Glee put the whole cast in wheelchairs and introduced two characters with Down syndrome... While the ideas of team-building and of walking a mile in someone else's moccasins aren't totally awful, I had my issues. Naturally!

First, disability simulation exercises usually lead to more pity than understanding (you can tell by the things people say when they are over--more about relief and feeling bad for people, rather than about empathy and feeling more like people with disabilities.) Secondly, having seen professional wheelchair dancers, the performance was kind of one-dimensional...

My daughter saw the show before the rest of us and her concern about wheelchair issues took a definite back seat to her anxiety about what was going to happen between the cheerleading coach and the young teen with Down syndrome.

My son, the actor and I have been discussing whether an actor who can walk should portray a wheelchair-user. He points out that acting is all about portraying people you aren't... He pointed out that he's played a farmer, a skeleton, a soldier, a student, a drunken businessman, and several variations of old men, and some really disturbing evil characters. He's only played a teenager once and that was a boy from the 1940's.

We have talked about blackface, about the percentages of disability in the real world vs. that on TV. And the percentages of average-looking people in the world vs. those portrayed by Hollywood...

As I say the conversation has been interesting. And unresolved... but that's how discussions with teens are!

Interestingly my blog-friends who use wheelchairs hated the show (see here) the bloggers who have kids with Down syndrome liked it (see here and here.) As Wheelchair Dancer points out, a consistent disability message is hard to find, and heirarchical thinking is often accepted--or even promoted--within the disability community itself.

I myself think the show has potential for disability acceptance. They are willing to 'go there' with tough subjects (as evidenced by the ongoing story about the gay student and his father... and all the teen trouble that's rampant, etc) and they don't lose their sense of humor or style as they do it... Kids LIKE the show!

IF they could come to understand that they don't have the whole picture of disability and look outside themselves for info, I think they could be awesome. Some say it's a big IF... we shall see.

To start with:

*They could have the teen girl with Down syndrome pay back the friend that bought her a cupcake--or better yet, lend her some $$. She should be a contributor, not just a recipient.

*They could introduce the kids to some REAL dancers who use wheelchairs.

*Lots could happen with the teen with Down syndrome... and with the big sister (though even if she must live in a nursing home she should still be and about, unless she's sick...) They also need to watch the 'childlike' stereotype.

*They would need to stop the remarks about "Never being able to get up... Never not be disabled... etc..." Gag me. Pity--for self or others--is not a viable life-strategy.

*They could also play up the realizations that many of the kids voiced that using a wheelchair lowered their status. Should it?? Um... no... but it does. That could be explored.

*There is lots of story potential about the difference between accommodation and unfair advantage. It is tricky stuff, but they worked that in with their "Diva-Off," I think they could handle it... IF they got some real input from the disability community.

A lot of this could be woven in with the other story-lines... And finally...

*How's about a Glee-ADAPT mashup??? :)

Just my thoughts!

Wednesday, November 04, 2009

Advocacy Skills: You Too Can Give Testimony

Yes, you. Yes, really! Trust me! :)

As mentioned in my last post I gave testimony at the NY Senate Finance Committee Budget Hearing on Monday. I learned to give testimony during my Partners in Policymaking training and I learned even more Monday. I traveled with a friend of mine who was scheduled early in the day and I was scheduled later (even though I signed up before she did!) I ended up being the last speaker of the day so I pretty much heard EVERYTHING. It was a long day.

First, the basics: Many agencies or branches of government hold hearings or have opportunities for the public to speak their piece. I have attended hearings hosted by the OMRDD, Department of Education, County Legislature and more. You can learn about these opportunities from connected friends (get on an e-mail list or 7!!!) or from agencies' web pages. Regional budget hearings are a new innovation in NY--a very positive one, I think.

Hearings are held when a group or agency wants to hear from the public either to guage sentiment, gather information or demonstrate the existence of support/dissension on a topic. They will announce the hearing and often include a list of topics they are interested in. You don't need to address all of them--just what interests you.

The announcements also include things like how much time you will have to speak, whether or not you need to register and whether they want copies of your testimony (bring some anyway and give them to the clerk even if they don't formally request them.)

Giving testimony is really a good type of public speaking--you usually have only 2-5 minutes and you are EXPECTED to read it.

People generally begin by thanking whoever they are talking to, introduce themselves, give the body of their thoughts, and end with a call to action (telling the panel to either do something or stop something.)

After listening to way too many folks talk the other day I have some other pointers to add:

First a RULE (NOT a pointer!!!) Stay within your allotted time. Write your testimony, practice it and edit it until it fits. Do NOT go over your time. EVER!!! If you do I want you to imagine my pointy elbow in your side--that's right, a little virtual negative reinforcement for you. Because I care.

I know--you're passionate. I know--you have important things to say. Guess what?? Everyone there is passionate and all the issues are important. Once time has been called, no one cares about your ideas or issues anymore. They just want you to go home.

That is not the impression you are trying to make. Cut it!

To their credit the Senators remained pleasant and engaged all day. I can't imagine how. I did not catch any of them dozing or rolling their eyes... very impressive, actually.

Be memorable. There are a few ways to do this. You can incorporate some short, quotable statements or sound bytes in your talk. Don't overdo this or you will sound like an advertisement rather than like testimony, but make your take home points stick with folks if you can.

Tell your story. An agency director I know elected not to go to the hearing because he thought hearing from parents would mean more. In retrospect, I think that was a good call. There was one mom who told the heartwrenching story of her child's behavioral needs and the services that rescued her family. She had the whole room wiping their eyes--I would not want to be the legislator who cut her program! I don't even know if she ran over time, that's how engaging she was.

Connect to your issue. Use word pictures and examples. Try to touch BOTH your listeners' heads and their hearts.

Numbers. Now I admit I hate numbers, and it is likely that people on the Senate FINANCE Committee don't hate them as much as I do. Yet, sitting in a room hearng list upon list of numbers kind of makes them all run in together. Give a few salient numbers. Give your numbers some context. Someone talking about libraries pointed out that their user numbers were greater than the attendance at the Buffalo Bills and Sabres games... And even I still remember it.

Delivery. Speak with some enthusiasm. And as much clarity as possible. Edit enough that you don't have to rush. You don't need to be a master-performer, but enthusiasm and blahness are both contagious. You want to generate enthusiasm (Enthusiasm doesn't just mean being happy-happy. Passionate frustration works too.)

Hyperbole. I really didn't see this Monday, but I have at other hearings. Don't be over-the-top in your manner or descriptions. You are trying to be credible, not generating market-share for your talkshow. Be compelling AND credible.

Structure your statement so that you can cut out pieces if your point has been made repeatedly or if they decide they need to shorten everyone up for time (though if they just turned off microphones afer time was called this would not be necessary!) Journalists recommend the "inverted pyramid" style of writing. I don't do that, but I do organize things in chunks I can remove if needed.

Practice what you have written. Fix things that just don't sound right. I wrote about dismal employment rates, my mouth really wanted to say 'dismal unemployment rates.' After flubbing it 4 times I changed it... it was SO much easier that way!

Written testimony. Bring copies of your testimony--and other supporting documentation--for the committee even if they don't ask for it. And include contact information. This way they have something to read later if they are so inclined and if you are cut short they still have your whole spiel to consider.

Change it up. If I go to another hearing about this I will add different points (like, no one mentioned that Medicaid dollars all get spent in the local economy...) Speaking to the same senators you would want to set a familiar tone, but not be totally repetitive.

Supersize it. If you spent the time writing testimony it should be USED! Blog it. Put it in your group's newsletter. Turn it into a letter to the editor... send it to legislators who weren't there... Come up with your own ideas on this. Do not ever waste efforts!

It isn't difficult... it is over in 2 minutes... it can make a difference. Try it!

This picture is my friend Jackie ready to give her testimony.

My Testimony at NY Senate Finance Committee Budget Hearing

On Monday I gave testimony at the NY Senate Finance Committee Budget Hearing in Buffalo. It was a long and interesting day... I will have more to say about that tomorrow.Here is my testimony:

Thank you for the opportunity to speak to you this afternoon about our state budget.

As a the mom of a child with Down syndrome, and as a member of the board of the Flower City Down Syndrome Network in Rochester, I am upset both by Governor Paterson's Deficit Reduction Proposal and by the Republican counter-proposal to make severe cuts to Medicaid services. These cuts unfairly victimize people with disabilities.

As a homeowner I know that neglecting a leak in my roof will lead to damage to my ceilings, then to my furniture, then to my rugs, then to my other belongings, eventually damaging the house’s very foundation, and I might even lose my house. Because of this cascade of ever-worsening problems, fixing even a small leak in my roof becomes my priority. Even when my budget is tight.

I submit that the people of NY—people like my daughter--respond to neglect much the way my house does to a hole in its roof. I believe that the proposed cuts to the OMRDD and Medicaid, and the cascade of damage that will follow for New York, and for New Yorkers and for my little girl, should not be allowed to happen.

The OMRDD provides funding for services for people with Developmental Disabilities including those with Down syndrome. This funding brings in Federal matching money which I know our state can't afford to lose. .

Agencies which rely on both OMRDD funding and Federal matching funds may well find that grants they receive from other sources are jeopardized by these cuts as well. Some of these agencies may be forced to close their doors, most will have to cut services and staff. Where does that leave our kids?

Increased unemployment--both of caregivers and of people with Down syndrome and other disabilities--is another problem our state simply cannot afford.

Unmet care needs and fewer caregivers will lead to deteriorating health and increased burdens on the state’s life-care and healthcare systems. We can’t afford this either.

People with Down syndrome and other Developmental Disabilities really have no private options for meeting their needs. They contend with a dismal unemployment rate. And the pre-existing condition of their disability necessitates Medicaid eligibility. Consequently, very few have more than $2000 to their names, making it virtually impossible for them to afford anything else.

These proposed cuts unfairly and unnecessarily victimize people who already live in poverty. This is wrong for my daughter—it’s wrong for anyone’s child.

As our legislators you must find ways to re-structure necessary budget-cutting without laying the burden on people who have Developmental Disabilities like Down syndrome--who have nowhere else to turn.

Thank you.

(I took the picture from the back of the room... you can see the crowd and the senators on the stage. In the crowd are many folks in orange--they are from ADAPT.)