Tuesday, December 30, 2008

Siblings and Disability

I have always loved this song from White Christmas--it is sweet and funny. I don't know any songs that include both brothers and sisters, but I wish I did. I have 2 brothers myself and have 2 daughters and a son... For both my husband and I, our siblings are some of our closest friends--we are lucky people.

One of the best blessings and biggest challenges of having a child with a disability is their siblings: What do you do with them? Are you giving them enough? Too much? Are you expecting too much? Are you giving them burdens? Are you giving them gifts? It is so hard to know.

There's research that shows that siblings of kids with Down syndrome report positive outcomes such as responsibility, tolerance, patience, etc. There is a lot of advice available--some of which is ok and some of which is just maudlin--buyer beware! (I think this article is pretty good.) There is also a lot of discussion at home and on the blogs of how and when and what to ask of our kids. Rickismom (my old friend!) really made me think with this post earlier this week.

On weekends one of my little treats (if there is time)is checking in on a bunch of crafty, homey blogs. This weekend I read a wonderful post by Pioneer Woman. Not only is she a really wonderful writer she is also, as it turns out, the sibling of a man with a disability. Her post about her relationship with her brogher embodies the love, respect and, yes, the struggles that I hope my own older children will embrace for their sister.

We have worked hard here to build up each of our kids as individuals and to develop our relationships with one another as a family. My own belief is that accommodating our differences and needs and gifts as a family is part of the adventure and the patina of our family--it's what makes things fun and what seals us together. We have told our kids that we want them to be part of Jennifer's life always AND that we will work to manage the level of dependence that she will have on them--together.

How do the rest of you address sibling issues? How do your kids respond? How does it work for them as adults?

Sunday, December 28, 2008

21 Things Unrelated to Down Syndrome

I got this meme of sorts from rickismom and she got it from Maureen…it looked like fun so I thought I would play too.

• Jenn LOVES movies. Especially musicals.
• She likes the subtitles ON when she watches movies—in ENGLISH she insists. We always offer different language options—we are just annoying.
• She also loves theater and concerts—good thing because her sister is a music (therapy) major and her brother is an actor…
• She loves being in chorus (prefers it without the audience though.)
• She has a very funny sense of humor.
• She loves to listen to the radio and sing along. She knows all the latest songs. Some of which make me cringe, but she is not my only child that knows them…
• She likes to read—gets very attached to certain books.
• She has long, blonde hair.
• She likes the idea of dogs, but not actual dogs.
• Jenn loves to run track—hates basketball (too much noise and they keep throwing things at you!)
• Math, sewing and cooking are great.
• She does not like pickles or spice cookies or salsa.
• She has to be pretty motivated to tolerate loud noises.
• Her favorite foods are pizza, cheeseburgers and whatever I am making for dinner tonight (a refreshing change from her siblings whose least favorite food is whatever I have cooking!)
• Her favorite part of High School Musical III is that Zac Ephron is “mad hot!”
• She loves babies, though they make her nervous when they cry.
• She will negotiate away almost anything to get to sit in the front seat.
• She loves her family and keeps everyone’s pictures on her digital key chain.
• She really does not like shopping though she does like getting stuff.
• She likes going on vacation—and likes coming home at the end.
• She makes everything fun.

About the picture: A bunch of folks standing outside the church where my brother got married. My kids are in the middle, my s-i-l is to the right and my uncle to the left. I don't know who the folks in the background are.

barriers, bridges and books

Saturday, December 27, 2008

Geraldo Rivera and Community Living Options for People with Disabilities

Not very long after my daughter with Down syndrome was born I went to a conference about some sort of disability issue. I don’t actually remember the topic of the training, what I remember, that cut me to my soul, was the conversation at my lunch table between a young woman with Down syndrome and her mom.

The woman was about 20 I thought and she was complaining hard to her mother about how much she hated her job… her mom put her off and told her that she couldn’t change her job because her home situation was attached to her job. The young woman was quiet for about a minute then she said that was fine because she hated her house too. She went on to say she hated her roommate, hated that she couldn’t paint her room the color she wanted. Her final sentence was that she shouldn’t be in prison because she hadn’t done anything wrong.

I drove home thinking about that gal with tears streaming down my face. I knew that a lot of what she was doing was ‘putting on a drama for her mama’ (as we call that at our house.) I also knew she wasn’t wrong—she lived a system-based life and she did NOT have a lot of choices. I was pretty choked up when I was telling my husband about it and we determined that afternoon that we wanted Jennifer to have what we call “a life anyone would want.” Nothing else could be acceptable.

This article appeared in my local newspaper yesterday. It tells the story of a local girl with a spinal cord injury who is successfully hosted Christmas in her own home after moving out of a nursing home this year. They say the road has been rocky at times (which it is for anyone who lives on their own—if we have one more plumbing problem this month I am moving!!!) And she feels like it has been worth it.

Tonight ‘Geraldo At Large’ also highlighted the importance of community living options for people with disabilities tonight. (The preview I have is all that is available so far, but I will post or link to the rest if it becomes available. It was really good food for thought.)

The points in tonight’s show were clear:
• Community based living options are cheaper for taxpayers than institution-based care.
• Any kind of care that can be provided in a large institution can be provided in a smaller setting in a community.
• A conservative estimate of the waiting list for services for adults with disabilities is >700,000 people.
• People with disabilities deserve and need to be part of their communities—for education, for employment, and for choices for living. With these opportunities they can contribute to their communities.
• As Geraldo Rivera said in the program, “In these economic times the fear is that the people who will lose the most are those who are the quietest—the elderly, the ill and those with disabilities.” (This is a paraphrase—I only heard it once, but I will link when it becomes available and you will be able to hear it for yourself.)

States are cutting their Medicaid money and leaving people with disabilites more dependent.

Let your voice be heard to end the waiting lists, to fund Medicaid waivers and for cost-effective community living options for people with disabilities. Vote on Change.org (Just click on the widget up above), write to your representatives, write letters to your editors. Get this issue on the country's radar screen now--waiting will lead to deeper crises of neglect in health, housing and opportunity for people with disabilities

Other articles about lives anyone would want here and here and lots more here.

Picture from here.

Tuesday, December 16, 2008

We Have a Problem: SNL and David Paterson

(Updated to correct errors!

The disability community has an image problem.

The narratives BY people who have disabilities does not match the overriding cultural narrative ABOUT disability in society today.

For example:

In this article Michael J. Fox tells how he feels about his Parkinson’s disease.

In this article author, Gary Presley (who has also been featured on my blog—yes, I am bragging!) tells how he feels about his disability.

The blogosphere is full of such examples.

Now what is presented about disability?

In this article kids with disabilities are taught about disability using simulation exercises. This is a fairly common—and controversial—way of teaching about disability.

Want to know why the controversy? Read the reactions of the kids when the exercise is over. Are they positive or negative about disability when the program is over? Are they saying the things Michael and Gary are saying about their disability? Do they now feel that they have more in common with folks with disabilities? Or is it more like they now realize just how different ‘those people’ are??

The kids are saying “thank goodness this was only a game!!!” Does that sound like they got a positive picture of disability from the program?

(Do you want to know why they didn’t? The exercise gave them a vision of struggle without any context that showed that the value of doing it and no relationship to make it connective. People rarely need help figuring out what is different about other people. They need help finding or building COMMON ground! But I digress!)

As I say the disability community has a crisis of image in our society.

The world believes that people with disabilities have inherently less competence, that they are needier, contribute less and don’t matter as much as everyone else, and that their lives automatically have less happiness than other people’s. Though the research does not agree and individual stories vary widely, this message is sent in large and small ways, day in day out and is virtually unchallenged. It just grows and grows.

These poisonous perspectives on disability pervade every arena:

Medicine: Did you see this report from the March of Dimes last week? In light of this report, why is the American College of Obstetrics and Gynecology spending any time or energy reducing Down syndrome? Lives of people with Down syndrome are improving. While other babies need their help.

Media: Read this article about a series from the New York Times. It is trying to showcase an important issue, but what does it say about disability? I think it engenders pity (a looking-down-on emotion) and I think disability is almost blamed for the circumstances in some of the articles. This is ridiculous, disability does not create lack of access. In fact, the opposite is true. Lack of access is what’s disabling.

Public Policy: It has required separate laws to include people with disabilities in schools (IDEA), public life in their communities and workplaces (ADA), and access to healthcare, assets and more. Society can be so unaware and/or unwelcoming of folks with disabilities that the government has to tell us to include our neighbors. No wonder the rate of unemployment for people with disabilities has been at or around 70% since the 1980s—and since healthcare is linked to employment (and the lack of prior diagnoses) healthcare coverage for adults with disabilities is nearly non-existent as well. All because of society's beliefs about disability.

And Entertainment: In August we had Tropic Thunder where Dreamworks Studio checked in with people of every minority group they lampooned to be sure they did not cross the line from entertaining to degrading—except people with disabilities. There was another movie this fall that gave a degrading view of blindness. What, do you suppose, is this industry's belief about disability?

Then this past weekend on Saturday Night Live Governor David Paterson was satirized. Now I love political humor—Letterman, Leno, Stewart, Colbert, and many more all entertain while they deflate political personalities that usually NEED deflating—it’s practically a public service. And everyone has traits to make fun of.

Unfortunately SNL decided not to lampoon David Paterson this weekend. They ridiculed blindness instead, equating it with bumbling lostness, vagueness and incompetence. There was no irony and no connection at all to the way Gov. Paterson actually is. Just stale stereotyping.

People with disabilities are not defined, nor are they confined by their diagnoses. Disability is the largest minority in our country and the last to be accepted and respected as such. People with disabilities deserve access, opportunity, choices and inclusion in their communities.

And. Respect.

Picture from here.

Thursday, December 11, 2008

Under the Weather

Note to self: Don't get sick in December!!!! I have been hacking and chilled for the past 3 days and I am so tired of it. AND I am getting NOTHING done. AARGH! Not one foofy bit of seasonal glitter graces my home which makes me a mixture of sad and stressed.

I am supposed to go to a training tomorrow. I want to go to my training tomorrow. I need to go to this training tomorrow. Have you heard of the Eden Alternative?

It is a project (and a process) for turning elder-care from institutional lives everyone dreads to 'lives anyone would want.' What an awesome change!

We are going to hear about leadership from Nancy Fox. I need to get better overnight... OK???

Wednesday, December 10, 2008

Inspiration for the Journey: Blog Carnival

This ongoing journey requires faith in the power of a single lamp to hold the darkness at bay. It demands confidence in the power of humble actions to act as an inspiration, or a magnet, and draw in greater energies. There is also a need for a certain agility and strategic planning that puts these positive energies a few steps ahead of the negative trends. And, above all, we need a constant awareness that the 'other' is not really different from the 'self'. --Rajni Bakshi

Each time a man stands for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current which can sweep down the mightiest walls of oppression and resistance. (Robert F. Kennedy, Jr.)

We cannot hold a torch to light another's path without brightening our own. --Ben Sweetland

Never interrupt someone doing what you said could never be done. Amelia Earhart

True heroism is remarkably sober, very undramatic. It is not the urge to surpass all others at whatever cost, but the urge to serve others at whatever cost --Arthur Ashe

We learn wisdom from failure much more than from success. We often discover what will do, by finding out what will not do; and probably he who never made a mistake never made a discovery. --Samuel Smiles

If there is no struggle, there is no progress. Those who profess to favor freedom, and deprecate agitation, are men who want crops without plowing up the ground, they want rain without thunder and lightning. ~Frederick Douglass

For to be free is not merely to cast off one's chains, but to live in a way that respects and enhances the freedom of others. --Nelson Mandela

Rest when you're weary. Refresh and renew yourself, your body, your mind, your spirit. Then get back to work. --Ralph Marston

It takes guts to go out the door. It takes courage to enter the world. Because every day there will be hurt, every day there will be stares, comments, social violence. Every day takes a renewed spirit and a sense that it matters what I do, it matters where I go, it matters the respect I demand.

It matters so I do it.

It matters so you do it.

Because our lives have been imprinted with disability.

Therefore our lives have been gifted with purpose. Dave Hingsburger

Where there is no extravagance there is no love, and where there is no love there is no understanding. --Oscar Wilde

So keep fightin' for freedom and justice, beloveds, but don't you forget to have fun doin' it. Lord, let your laughter ring forth. Be outrageous, ridicule the fraidy-cats, rejoice in the all oddities that freedom can produce. And when you get through kickin' ass and celebratin' the sheer joy of a good fight, be sure to tell all those who come after how much fun it was." --Molly Ivins

Innovation is fostered by information gathered from new connections; from insights gained by journeys into other disciplines or places; from active, collegial networks and fluid, open boundaries. Innovation arises from ongoing circles of exchange, where information is not just accumulated or stored, but created. Knowledge is generated anew from connections that weren't there before. --Margaret J. Wheatley

There may be times when we are powerless to prevent injustice, but there
must never be a time when we fail to protest.
Elie Wiesel

Empty pockets never held anyone back. Only empty heads and empty hearts can do that. --Norman Vincent Peale

Of all tyrannies, a tyranny exercised for the good of its victims may be the most oppressive. Those who torment us for our own good will torment us without end, for they do so with the approval of their own conscience.
C.S. Lewis, 1952 (found here

Everyday courage has few witnesses. But yours is no less noble because no drum beats for you and no crowds shout your name. --Robert Louis Stevenson

Let us realize that the privilege to work is a gift, that power to work is a blessing, that love of work is success. --David O. McKay

More quotes here.

Friday, December 05, 2008

Carousel, Domestic Violence and Disability Advocacy (pretty much in that order!)

I hope you enjoy this video. The female singer is the incomparable Renee Fleming. She is from our area so we claim credit for her (no, we have never met her—does that matter?) I love this recording. Aren't they wonderful? The very beautiful and inspiring song they are singing is from Rodgers & Hammerstein’s Carousel. Isn’t it lovely?

My high school put on Carousel my junior year and I LOVED it. The songs were beautiful, the story of the tumultuous life of a young girl who works in a factory who falls in love with a carnival barker was SO touching, the French horn part was awesome, and there was so much EMOTION… It was perfect.

This song, a couple of the others and the scene where the girl shares that, in spite of everything, their love was worth it had me weeping every time I saw it.

And I was in the pit band.

I saw it many, many times!


Well, I saw the movie for rent a few years back and I grabbed it. I gathered my family, primed them with “when I was in the pit band” stories until everyone’s eyes just about rolled out of their heads, made treats and settled down to watch it.

Everyone liked the movie most of the way through, but during the ‘touching declaration of love’ scene my daughter turned on me and yelled, “WHAT did she say? I CAN”T believe you like this movie!!”

Do you know why? Because it’s a story about domestic violence, that’s why.

Actually, it’s a story about passion, but its vehicle is an abusive relationship.

My daughter was incensed and I was pretty taken aback myself…

So, what had happened? What changed my view of this show from “love it” to “love the music, but have some serious reservations about the story?”

It wasn’t maturity—I was young in high school, but the teachers who chose it and directed it and the folks who sat in the audience weren’t (most weren’t ancient, but they were adults.) And my kids were younger than high school age when we watched it.

The difference is cultural.

In the 1970s ‘hurting the ones you love’ was seen as an unfortunate, but accepted part of some relationships.

Today—thankfully—much of society recognizes abuse as wrong and NEVER acceptable. Even the kids get it.

The culturally accepted belief or conventional wisdom about domestic violence has changed.

And, this change did not come easy. Activists struggled, fought, and WORKED on many fronts to get this narrative to change. They worked with the medical community, law enforcement, the media, policymakers, the entertainment industry, the educational establishment and more to build this change.

Today, unlike when I was in high school it is understood by way more people that
-violence is not part of love
-if someone hurts you it is their fault, not yours
-that you shouldn’t stay in abusive situations

Abuse hasn’t ended—yet—but it is recognized as wrong by more and more people every year. The work of these activists has saved lives. The work of these activists is changing the world.

Now, let’s talk about the disability community.

Whether we are hardcore activists or moms and dads looking for a single classroom for a single child, we have a role in creating a cultural narrative about disability—where we live and beyond.

This happens in big and small ways. Not everyone needs to storm the capitol, but everyone does have a role—every one of us teaches the people we reach something about disability every day.

So, is the message of your life that people with disabilities are valuable? That they belong? That disability is just part of life? Is your message advancing a disability-welcoming (or at least disability-neutral) belief? Are you creating a positive culture for yourself or your children? Or aren’t you?

Our presence builds our credibility which builds our influence (have I mentioned this before? Why yes, I have!) Our message—as we live it—changes the world…

One day my grandkids will watch some story about a person with a disability fighting some obstacle, and instead of being inspired by heroism they will be incensed that the obstacle was there in the first place.

I believe it will happen.

I know it will happen.

And I cannot wait!

Wednesday, December 03, 2008

A Vocabulary Problem: Eugenics and Down Syndrome

Apparently there is a newspaper columnist in the world, whose platform is to advocate vehemently and persistently for people with disabilities in general—and Down syndrome specifically—to die.

Well, apparently this person does not like the word eugenics to be associated with her point of view. She thinks the term eugenics has too many negative connotations. She believes, apparently, that ridding society of a class of people—if you have a “really good reason"—should have a happier sounding title.

And this person KNOWS they have a “really good reason" because they have observed dysfunctional families which include this class of people and it was…. bad….

There were struggles. And hardship.

Clearly this means that…..

ALL families who include this class of person are dysfunctional…. and bad….

So, she can’t help but conclude that…..

This class of people should be eliminated.

It isn’t exactly scientific, or even logical.

Life without disability is also fraught with difficulties and struggles—in fact, there is dignity and valor that cannot be achieved without struggling.

Apparently this authority has never observed that.

Supports for people with disabilities (like access to education, healthcare, employment, and life in the community) greatly reduces hardships for people with disabilities. (I have written about improvements in life with Down syndrome here.)

Support for dysfunctional families often improves that family's functioning.

But our friend has never observed these things either--which means they don't exist, naturally. Also.

Honestly, the first time I heard this person spew their drivel I thought it was a satire.

But no. She is serious.

Or, I should say, Serious (with a capital S.)

I will NOT link to this person, or even name them, because if they get even one blog-visit because of me I will not be able to live with myself. (But I read about her on this website!)

But I do hate to ignore a person in need.

And situations where one group of people deem themselves superior and decide that the folks they deem as “less” should be eliminated is hardly a new event. There must be lots of vocabulary available.

Eugenics according to the Merriam-Webster online dictionary is defined as “a science that deals with the improvement (as by control of human mating) of hereditary qualities of a race or breed.”

Oh my, that is an UGLY phrase…. With so much BAGGAGE...

Fortunately, bigotry is an OLD problem. I am sure we can come up with something else.

Let’s see, when a ‘superior’ group eliminates others based on race, ethnicity, religion, gender, sexual orientation or some other difference are there other words used to describe the situation?

Try these: holocaust, pogrom, ethnic cleansing, persecution, genocide, extermination, hate crimes, abuse…. What did Idi Amin call it? What do they call it in Rwanda?

Help yourself to any of those words!

You're welcome.

Photo from here.

Monday, December 01, 2008

Unexpectedly Effective Advocacy: Strategic Use of Information II

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

Information and perception are always working—either for us or against us—with some attention and a few skills you can make information one of the most effective tools in your advocacy toolchest. I wrote about the setting some parameters about what to present and what not to present to support your goals a couple of weeks ago.

Now, you do NOT need to be perfect or understand EVERYTHING to advocate. And doing SOMETHING is always more powerful than doing nothing, but as a community we have full lives and want to get the most impact for any of our advocacy efforts. We don't have time or energy to waste--we need to think strategically.

I was pondering this at work this week and I thought something I learned as a nurse might help... When nurses are learning to adminsiter medications we are taught a little 5 item checklist that helps us keep track of what we are doing. When giving meds nurses need to make sure they have:

-The right patient
-The right drug
-The right dose
-The right route
-The right time

We call this little list the 5 Rights (clever, huh?) and when I think about it, this little list has some parallels in advocacy.

The right patient. It is obvious (I hope) what this means to nurses--and their patients!

In the case of advocacy I think this would mean consider your audience. Who are they? What do they want? What are their responsibilities? What do they know? What do they worry about?

Are you talking to self-advocates, parents (new or seasoned?), professionals, activists, college students or children? Or someone else entirely...

Adjust your presentation accordingly. Your examples, use of jargon and demeanor may need to change to meet the needs of a different audience--don't give the children's presentation at grand rounds at your local medical center.

The right drug. Again, it's fairly obvious how this applies to nurses. Advocates can translate this to "right message." Presenters--whether at IEP meetings or before congress--want to have a consistent pro-disability message.

Bobby Silverstein, famous for advocating for disability rights and his role in writing the ADA when he was on Sen. Tom Harkin's staff, gives this framework for issues that are pro-disability. He says pro-disability policy lead to greater:

-Equality of opportunity
-Full participation,
-Independent living and
-Economic self-sufficiency. (Bobby Silverstein, 2003)

Right dose. Patient tolerance for medications are very individual and specific. Too much of a medication can kill....too little will not be therapeutic.

The disability advocate needs to consider this thoughtfully. When we explode or over-do in our advocacy we can kill our issue with our audience... but if we do not say enough or say it strongly enough it won't be effective. Fortunately, there is a whole spectrum of possible responses between those two extremes. Attention to this issue alone can increase the effectiveness of your advocacy immediately!

Right route. Nurses need to know if a med should be given by mouth, injected or rubbed on the skin--these are not interchangeable!

Advocates need to consider whether their particular audience will respond most to 'heart' or 'head' messages. Or a combination of the two. What media should be involved? Consider using story. Author Robert Putnam points in his book Better Together that stories have the "...possibly unique ability to express thought and feeling simultaneously..."

Right time. Suffice it to say WHEN you take your pills matters. Some need to be given on an empty stomach, others need to be given with food, or close to bedtime, or not...

Advocates also need to consider WHEN they approach their audiences with their messages. Sometimes you must respond when the iron is HOT--the issue is burning now and being heard NOW is necessary if you want to have an impact. Other times it is best to strike when the iron is COLD--when the issue needs a long term approach or shouldn't be handled at the same time as some other burning issue.

For example, when the movie Tropic Thunder came out disability groups needed to put together a visible response immediately--protesting it a month later would have been useless. But working with the studios to increase their understanding and their working relationships with the disability community was a long term project that needed to be handled over time. (In fact we are starting to see the effect of those efforts now!)

I think having a framework for handling information strategically could be useful whether you are working on an individual need, or trying to change the world. Not as a formula, but as a framework for considering your options. Give it a try, let me know how it goes!

Picture from here.

Friday, November 28, 2008

The Next Blog Carnival is UP and other stuff!

A few things on the web that are too good to miss:

I updated it in my post from the other day, but Gary Presley's book has had a rave review in the New York Times!

The Next Blog Carnival is up at The Life and Times of Emma. The theme is "I am." (I think I missed posting that the Blog Carnival on Lists was up 2 weeks ago--good reading over there, some quite funny... check it out!)

I read this post this week over at Wheelie Catholic. Births of children with Down syndrome are rising in the UK... It sounds like the conventional wisdom there is becoming 'life with Down syndrome is not so bad.' What would it take to make that happen in the US? What would it take to expand that to include other disabilities??

In the US we're basking in the glow of Thankfulness and those of us who are not blogging this morning are shopping... In honor of the official start of the gift-shopping season, here is a blog that shares lots of Assistive Tech stuff all year and has gift suggestions for folks with disabilities up now. He will be posting a blog carnival of AT gift ideas in a couple of weeks--watch for that!

Wednesday, November 26, 2008

Our Friend Ange: A Life Anyone Would Want

I met my husband back in May of 1985 and within a couple of weeks he took me out to meet the friends he grew up with. They called themselves The Eastside Hecklers—this only worried me a little!

What a group! They were a bunch of guys and girls who all grew up together in one big neighborhood. Several, but not all of them, were of Italian descent, some of them went to the same grade school or high school or church…They had lots of history, lots of inside jokes and a habit of harassing the musicians—whom they’d also known forever—that performed at the neighborhood bar.

Little did I know that 23 years later these folks would have evolved from being acquaintances, to being friends, and by now, to being family…

And in this group was Ange.

Ange was proud of his Italian heritage, he drove a huge car (this was the 80s and we were really young—we all had used cars that were either tiny or huge!) He was funny, feisty, and never missed a night out. He was an enthusiastic heckler—that night he asked the musician halfway through the first set when the band was coming. And that musician (Jeff Elliott) always put his name into one of his songs… which he still sings…

(In the Jimmy Buffett song Pencil-Thin Moustache who do they really have an autographed picture of??? As far as I know it’s been Ange for more than 20 years!)

Ange was also the first guy to remind the motorcycle crowd when they left to go home, “Shiny side up!” He loved the Beatles and Jimmy Buffett and Lynyrd Skynyrd (mandatory generational and neighborhood favorites.) He was the music trivia king—and movies too, I think.

And, he had Cerebral Palsy.

Ange was born in 1963. He was born before inclusive education. He was born before people with ‘significant disabilities’ had hope of living in neighborhoods, driving cars, having friends who did not have disabilities, having intimate relationships, having children, etc, etc, etc.

And he did all of these things—and more.

This says tons about his family, his friends and him…

The past year, sadly, Ange battled cancer. UGH.

He died on November 10th.

At his funeral his cousin Scott said, “When Ange was born and had all his issues we knew he was going to be ‘special’ because of his disabilities. But we were wrong. Ange was special, but it had nothing to do with his disability. He was special because of the kind of man he became.”

Ange, we miss you.


Ange had a life that ANYONE would want—not a system life, not a disability life. A good life.

If all of this was possible for a man born in 1963 we have no business settling for anything less for ourselves or our children in 2008.

Can I have an Amen??

(In the picture Ange is the guy that's sitting on the bench.)

Tuesday, November 25, 2008

Surfers Healing Montauk: A Chat with Helene Fallon

Helene graduated from NY Partners in Policymaking in 2006. She is a parent of children with disabilities. Helene has a background in social work and became interested in educational programs as she pursued the programs her children needed. She now works under two grants funded by the State Education Department as a trainer providing technical assistance to families and school districts about special education and transition.

This September Helene and a team of organizations such as East End Disabilities and others hosted a Surfers Healing surf event for kids with disabilities and a very successful fundraiser.

I was in the area that weekend and I got to attend the events. I was amazed! First of all, this was my first time on Long Island. I had no idea that there was a place to surf in New York State! Secondly, this was a BIG event from beginning to end, so I talked with Helene to ask how they did it.

So Helene, how did you even get started?

Well, a couple years ago we heard about Surfers Healing and it seemed like a perfect idea for our area. We contacted the Paskowitz family who run Surfers Healing in California to see if they would consider coming here. When we found out they would, we put together a committee and got started. Long Island really needs recreational opportunities for kids with disabilities and Surfers Healing seemed like a great place to start.

We started small 2 years ago with a few surfers and our fundraiser that year and last year raised about $1000. Our committee was from all over the island and we were united by the over-arching goal of eventual sustainable recreation for kids with disabilities ‘on the island.’

This year they kicked it into full gear:

They had more than 100 volunteers (organizers, lifeguards, surfers and more.) And their fundraiser featured Jimmy Buffett—he has a house on Long Island and he and his staff are very dedicated supporters of kids with disabilities.

Despite questionable weather—overcast through the surfing, POURING through the (outdoor) fundraiser—they had 120 surfers this year and the Jimmy Buffett concert and silent auction raised more than $100,000. (I nearly drowned, but couldn’t have had a better time!)

AND!!! The first meeting to plan an ongoing swimming-sailing-kayaking program including kids with disabilities on Long Island was held in October!

Helene’s advice:

Rely on partnerships, connections, networking and teamwork. Keep relationships going by staying focused on the team’s goal.

-Don’t accept barriers. Find partners that share your vision and keep going!

-Focus on staying organized.

-Keep at it—amazing things can happen.

Friday, November 21, 2008

Guest Blogger: Author, Gary Presley

Today we have a guest post from fellow blogger (bloggist?) Gary Presley. He has published a memoir, Seven Wheelchairs: Life Beyond Polio about his experiences with disability and has been so kind as to share some thoughts with us about writing and about disability--enjoy!

Gary writes:

Let's face it. You need to polish your ego a bit if you want to write a memoir. Frankly, I didn't have much of one. I was raised as an Army brat, which means the "children seen but not heard" school of thought. Oh, of course, a child was "heard" occasionally, but it was to say "Yes, sir" or "Yes, ma'am."

But I do have a bit of ego. In fact, I sometimes display an off-beat, twisted sense of pride that I'm one of the few people you'll ever meet who has used a wheelchair for nearly 50 years. Of course, that didn't come easy. For too long, I was something of a jerk – and an angry, bitter one at that. With that mindset, it took me several years after I begin to write before I understood that there was a story worth telling about that long, seat-of-the-pants journey.

It began when I wrote an essay entitled "A Pot to Pee in," a whimsical meditation on what it means to use that little plastic bottle called a urinal. I thought it was interesting enough, especially because it begin in the bad old days before there were accessible bathrooms.

I belong to a writer's critique group, and several members read the essay and said "You need to write a book."

And so I did. I thought maybe I could offer the world an opinion or two about what we call "disability" – about it being simply another aspect of the human condition, about the need to integrate people with disabilities fully into society, about the ugliness of institutional care, and about the absurdity of the so-called right-to-die movement.

The book – called Seven Wheelchairs: A Life beyond Polio – was a multi-year project, but it was published October 2008 by The University of Iowa Press. Many readers have responded with notes that they've begun to regard disability differently because of my book.

Now here's the odd part of this saga: In writing the book, I taught myself something too – about myself and about disability.

I learned – no, really remembered and understood – how significant a sacrifice my parents made for me after I begin to live on wheels. I learned how deeply held the guilt I feel about that – not guilt imposed by my parents but rather guilt generated by my dependence. No one ever told me what every parent should tell a child with a disability: there is no blame related to disability. Disability simply "Is" – and it is only one of the qualities that makes the child a person of value, a person worth loving, a person of promise.

And what did I learn about disability? Mostly that things are better now than in the bad old days when I became a polio quad. Better access to education and employment are the two most important. On the other hand, there's one element in the "living disabled" lifestyle that still restricts full integration. That's social integration – the idea that many of us with mobility impairments and other physical and mental conditions remain isolated. Barrier-free home construction would go a long way toward fixing that problem – as would a concerted effort by people with disabilities, and their supporters, to never hesitate to move proudly and confidently out into every community activity possible.

(The picture at the top is a photo of the author, Gary Presley. The one at the bottom is a picture of the cover of his book, Seven Wheelchairs: A Life Beyond Polio.)

Update: The New York Times gave this book a rave review!!!!

Wednesday, November 19, 2008

The 2008 Election

Hi All, I have missed you! So much to catch up on….

First, did you hear that we elected a new president? Yep, it’s true. January 20th Barack Obama will be sworn in!

Did you hear his speech? This is what he said:

“If there is anyone out there who still doubts that America is a place where all things are possible; who still wonders if the dream of our founders is alive in our time; who still questions the power of our democracy, tonight is your answer.

It's the answer told by lines that stretched around schools and churches in numbers this nation has never seen; by people who waited three hours and four hours, many for the very first time in their lives, because they believed that this time must be different; that their voice could be that difference.

It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled - Americans who sent a message to the world that we have never been a collection of Red States and Blue States: we are, and always will be, the United States of America.

It's the answer that led those who have been told for so long by so many to be cynical, and fearful, and doubtful of what we can achieve to put their hands on the arc of history and bend it once more toward the hope of a better day.

It's been a long time coming, but tonight, because of what we did on this day, in this election, at this defining moment, change has come to America….”

See that? See? Right there in front of the whole nation he mentioned people with disabilities. Our community is visible to our new president—and to the country—from the start. How cool is that?

So the question is, of course, what is this “change” going to mean for us? Truth be told, I won’t be happy with just any old change, I want IMPROVEMENT!!!!

And my other question is what are we, the disability community, going to do with all this recognition? This a huge opportunity ripe for some serious leveraging. (Remember, presence-credence-influence!)

So what do we want to gain with all this? I do have some ideas (surprise!) Let’s go for some
-Community living
-Civil rights
-Pursuit of happiness

Now I know that this is a difficult time for our country. I know that the economy and war and other issues will be obstacles.

I also know that we are a community that knows just how to handle obstacles. Obstacles are nothing new for us—we eat them for breakfast (and lunch, and dinner!)

I do believe, if we think and speak and act with intention and with each other—

Oh yes. We can.

(Picture of Barack Obama in red and blue with the word HOPE underneath.)

Sunday, November 02, 2008

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!

Thursday, October 23, 2008

Disability Blog Carnival #48: Capacities and Capabilities

Welcome to Disability Blog Carnival #48!

Several years ago I was a young nurse with the dream of teaching in nursing school someday. To test out my idea I would volunteer to present inservices on various topics at my workplace. It was a disaster. More precisely, I was a disaster!

I would study my topic, I would write my talk, I would practice and practice and practice. I would stand up in front of my co-workers and BOMB. I would forget stuff. I couldn’t answer questions. I would go home and cry.

I took a couple speaking seminars and tried again. And bombed again. And again.

Eventually I vowed that I would never attempt public speaking ever again.

Life went on and I got married and had children—and my youngest was born with Down syndrome. When she was a few months old I was approached by one of my friend’s moms. She was on the organizing committee for a huge seminar that was coming up in Rochester and she wanted me to be on a panel for her program.

I said NO about 75 times, but this was Susan’s mom and the topic was disability and this was Susan’s MOM…. So I did it. And it went great. No, really great—it was easy, I made sense. I answered questions. Once I stopped shaking I even liked it.

What happened???? My dad said it was “the difference between having to say something and having something to say.”

Disability gave me motivation and even skills I use all the time today. And this is just one of the capacities that has been developed in me since disability has become part of my life.

While I have no desire to sugarcoat anyone’s struggles (even my own!)and I am fond of a good old-fashioned rant, I also see value in acknowledging strengths and gifts and skills when I encounter them. These bloggers have their own capacities and capabilities to share:

Suzanne at disabilityjourney explores the gains disability has brought to her life in her post Them or Us. Dave from Chewing the Fat, in one of his wonderful stories, points out that some with disabilities see nonsense as just what it is in Half the Story.

Ettina from abnormaldiversity shares her idea that capacities coming with disability does not apply to people who have had their disability from birth in Disability Teaching a Lesson? But in her post Accepting Imagination Deficit she shares how important her creativity is to her.

Another blogger whose gift of creativity comes through is Maggie from Maggie’s World in her October post. And Goldfish shares some humour and ukulele love in I Went to the Shops and I Bought

Barbara from Therextras offers advice to parents of kids with disabilities who encounter folks who cannot see their wonderful, beloved children through their disability label/appearance in Blind to Normal.

Confused of Calcultta points out that people with disabilities are at the forefront of hacking and adapting technology to meet specific needs. Check out the post here.

Wheelchair Dancer objects to the concept of capacities and capabilities in relation to disability. She strongly asserts that capacity if often used by society to attribute value to the lives of people with disabilities and they do NOT determine value. Read her post Not Handicapped, Handicapable for some hefty food for thought.

Grace from Disabled 2 Able writes in Learning from Disability about what she learned through physical therapy, her chosen profession and what she and her daughters have learned about life since she contracted polio as a child. Grace says her daughters are skilled at evaluating accessibility. Learn more about accessibility as it relates to hiking trails from brokenclay.org/journal.

In The River of Jordan Jordan’s mom shares her son’s imitable spirit in her post Capacities and Capabilities.

Lorraine at Keep Bloggering On welcomes Sweet Abey James—with a wonderfully sweet picture! Debbie at Pipecleaner Dreams appreciates the value of wonderful treatment that accommodates disability graciously in Can I Take Your Order, Please.

Rickismom has a couple of posts for us about lessons learned at Beneath the Wings. She writes about her daughter’s success in learning chemistry, that some folks disbelieve that people with Down syndrome can learn at all (and their attitudes actually create that situation sometimes) and about how her own learning of language grew as she taught her daughter.

Historiann is a history professor who writes about the politics and economics of disability in her post, Memento mori: why single payer is the only way to go. Rob Q. Ink who often writes about sports (especially Philadelphia sports) as well as disability also examines politics in his post, Jumping into Election ’08. And Ruth at Wheelie Catholic also finds that her political involvement is informed by her disability experience in Well, I Have my Ballot.

Sometimes emotions can be overwhelming as Abby points out in It’s a Bit Early for Thanksgiving—but give thanks she does, as you will see. And Frida shares how she values some of her friends who share her disability as well as her own disability awareness and self-acceptance in the midst of pain in Weekend Update.

Debbie from A Life Without Limits: Rollin’ Into the Future catalogues the many characteristics she developed by going away to school in her post On my Own: Looking Back at my College Experience.

Thank you all for stopping by—come again, we never close! And thanks to all the wonderful bloggers who participated!

The next carnival will be hosted by Blake at I Hate Stairs and the theme will be “Lists.”

Why the picture?? Because disability is a mixed bag! And I got the picture from here.

Friday, October 17, 2008

Reminder: Disability Blog Carnival Here Next Week

Just a reminder folks: I am hosting the next Disability Blog Carnival here next week. My theme is Capacities and Capabilities and I would love to include your post.

What have you learned or become that you might not have without and encounter with disability? Have you become a medical expert, education specialist, behavioral manager, mechanic, efficiency expert, law specialist, problem-solver, activist, interpreter, ambassador, poet? Or something else that I haven't thought of....

Has your faith, creativity, determination, efficiency, patience, impatience, techno-savviness, assertiveness, connectedness, sensitivity, sense of humor or some other trait grown or been changed? Any of the above? All of the above? None of the above, but something else entirely??

Then write it up, or take a picture, make a video, put it in an acrostic poem--or a sonnet, or haiku (though I won't get it--I just don't get haiku :) )

For the record, I know that disability is not all sunshine and roses. I do realize that everything is not all special all the time--I also know there are things that I have gotten to (or had to) learn, and folks I have gotten to know that I would have missed without disability.

Life's a mixed bag. Out of that bag, what are the capacities and capabilities that bring you through??

Think about it and put something together this weekend so I can link us all together next week. C'mon, it'll be fun!

Leave a link in the comments here, at Disability Studies, Temple U.,or through the Blog Carnival form (excluding CAPTCHA in play over there still.) I can't wait to hear from you!

Photo from here.

Tuesday, October 14, 2008

Unexpectedly Effective Advocacy Skills: Strategic Use of Information (Part 1)

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

Information and perception are always working—either for us or against us—with some attention and a few skills you can make it one of the most effective tools in your toolchest.

Take a moment and read this article.

What struck you about it?

I have a few impressions:
• It is from Wasilla—a few short months ago I had never even heard of Wasilla.
• It’s a transition program—sounds quite community-focused. Lots of good skills taught and some success.

This sounds like a good program. And I found this part of the article upsetting.

If this article were written about me I would be mortified (though I almost never forget to brush!) If it were written about my older two children the screaming at my house would never end—and neither would the harassment they would get from their friends. Yet, it is almost expected that these remarks will be written about our kids with disabilities.

Some will say “but it’s accurate.” And it is of course. Truth be told, most all of us have used the bathroom and performed some personal hygiene today (or if we haven’t, we certainly should have!) Yet, for most of us, our success or failure in this area won’t make the papers.

The reporter was looking for a story that illustrated that the program was supportive. The program (accidentally, I’m sure) gave her an easy way out by holding conversations that should have been private in front of her.

There were choices. It is not that they HAD to humiliate somebody in order to get their point across. The program probably also showed the reporter a client who was using much support and many repetitions to learn a job skill. Same story about needed support—dignity intact.

The reporter chose the more sensational angle.

See, the program showcased what they wanted to say, they just weren’t as vigilant about not showcasing what they did not want to say.

We want the world to look at people with disabilities and “Presume Competence” as writer Kathie Snow says. We can support this by Presenting Competence.

And if this can happen with experienced programs it can happen to any of us, and it often does.

The trouble is we look at where we are and what’s next, not at the bigger picture.

We're like sheep. Yes, sheep.

Sheep keep their heads down and munch their way along from the hunk of grass they are eating now to the next tasty hunk. They don’t look up to notice that they have strayed far from their path, to see the wolf, or to see that they are on the edge of a cliff until it’s too late.

Lucky for us we aren't sheep. We can minimize these occurrences with some planning.

Start by planning your underlying message. Set some parameters that don’t really change no matter what you are trying to achieve.

Having standards in place helps keep you from making as many unknowing blunders.(There will still be some and they will make great blog fodder, but minimize where you can!)

This could keep you from presenting your child as totally pitiful (in their hometown where you someday hope they will get a job) in order to make $$ for your parent group for example.

Now you may want to raise money for your group and your child can certainly be a part of it—this only makes you think about how.

Decide where you intend to go: My family believes that our kids—all of them—are valuable, they belong, and their weaknesses or struggles do not cancel out their strengths.

Equally important: Decide where you will not go: We will not embarrass each other. We all have dignity which we will defend. Details are shared thoughtfully. Privacy applies to all of us.

Compare your current situation with your planned message frequently to stay on track. Also check in with others. I run some of my blogposts by my friends or my kids to make sure I am on track and not humiliating anyone.

This doesn’t mean I can’t tell most stories—it just sets some parameters around how I tell them. For instance, I can mention that I am doing lots of laundry because of a stomach bug, but can’t detail exactly HOW the laundry got so dirty (somehow I think my readers are ok with this!)

I can showcase the funny, the frustrating, the wild, the weird, the quirky and the sloppy, good, bad, and downright icky—I just can’t make my kids look pitiful, stupid or less—ever.

Not even for a good cause.

Setting the internal parameters is the first step. Over the next couple of Tuesdays I will talk more about using information strategically to affect the situations you face. Have a lovely week!!!!

picture from here.

Sunday, October 12, 2008

Disability Blog Carnival #47 Is Up

This is the 47th Disability Blog Carnival and it is posted over at Day in Washington. The theme is Policy. As always the carnival is a gathering of interesting perspectives. Go read!

The next Disability Blog Carnival will be posted HERE on October 23rd. The theme will be Disability: Capacities and Capabilities.

There are many things I have learned about and have learned to do because of my experience with disability that I might not have learned otherwise. I think this is true of many of us. I think folks inside and outside of the disability community rarely recognize or celebrate the skills we have gained.

You can send your posts through the Disability Blog Carnival site (which, sadly, has inaccessible CAPTCHA) or you can leave the link in a comment on this post, or in a comment over on Disability Studies, Temple U. Or you can just put Disability Blog Studies in the title of your post and Fearless Leader Penny will usually be able to find them.

Friday, October 10, 2008

Warning: I am Getting Political

Well, my original plan was to beg Sarah Palin to cut it out. She was driving me crazy by mentioning "special needs children" over and over again as an area of priority for her campaign.

It seemed to me that invoking "special needs children" without mentioning any substantive measures she supports to make lives better for people with disabilities was going after the "AWWWWW!!!" reaction.

Equivalent to saying "I love kittens." (AWWWW!!!)

I thought people with disabilities deserved more--they are not children long and they need actual support that will allow them to move beyond living in their needs so they can contribute--to our communities and to our economy.

Education leads to work. Healthcare leads to health. Employment leads to economic gain.... You get the picture.

I wanted to implore, mom-to-mom that she think bigger--our communities need it, people with disabilities need it, our economy needs it. I figured that when Trig was older she would feel she'd been superficial and regret it.

Then someone sent me this:

(The part that caught my attention starts around 2:30ish)

My plans for this post changed drastically. Call me gobsmacked.

First John McCain just gushed about "relieving the burden" of disability. I would be raging at the insult to the largest minority group in the country if I weren't gagging at the sentimentality of it all.

(FYI, Candidates: The biggest burdens people with disabilities experience are the barriers created by a society that discriminates against them.)

THEN Sen. McCain said that Sarah Palin is "uniquely qualified" to FIND A CURE FOR AUTISM!!!

Now, I have a Bachelors degree (though I only went to one university) and I have had a child with Down syndrome for nearly 15 years yet...

I have not cured autism--or anything else, actually.

Clearly I am not living up to my potential.

I had toyed with the idea that autism is just a different way of being human, that research could teach us more about autism's causes and treatments, that funding streams and media coverage was increasing awareness of autism....

Nope, turns out I'm just a slacker.

Sorry everybody.

Picture from here.

October is Down Syndrome Awareness Month

So read this.

And this. And this.

Watch this.

Go to one of these.

You are officially Down syndrome aware. Congratulations!

Is this enough? Are you there yet?

Ahem. No.

So what are the next steps you ask?

Respect people with Down syndrome.
Educate folks with Down syndrome.
Include people with Down syndrome in your churches, groups and events.
Welcome neighbors with Down syndrome.
Believe in people with Down syndrome.
Hire workers who have Down syndrome.
Support healthcare for people with Down syndrome.

Appreciate, enjoy and celebrate Down syndrome.

Get to know a person with Down syndrome—it could make your world a better place (it did mine!)

PS: My favorite moment from our local Buddy Walk? When a petite kindergartner with pigtails and Down syndrome said to my 14 year old daughter, "Do you have Down syndrome?" My daughter answered, “Yes, I do,” and they both smiled and sighed blissfully.

Loved. It.

Monday, October 06, 2008

Healing and Get Down: 31 for 21

Good heavens, where does the time go??? This past week has been overflowing with kid activities (my son was in a play and yes he was wonderful, thank you!)Once you step away from your blog--writing and reading--for one minute it becomes hours and then a week before you know it.... Forgive me, I have missed you all!

One of my blog-acquaintances is hosting a blog-fest on healing. I said I would join, I even wrote the post. I also found out about Get Down: 31 for 21 and said I would join that. Then I could only visit my computer for 10 minutes at a time. I have some serious make-up posting to do!!!!

So here is the link to the healing blog carnival. And here is my post:

Healing is a tough subject for me. To start with, I’m a nurse.

Combating illness and loss of health have been a big part of my life. When I graduated from nursing school I did my time in acute care, treating any change or deviation from “The Norm” (not the guy from Cheers… I don’t think…) like a sworn enemy. I felt powerful. It was grand.

Then I grew up.

Since that time I have worked in chronic care and gotten to know people with disabilities and I have learned that health, wellness, brokenness, and ‘the norm’ are not as clearly defined as I used to think. In fact it’s all pretty subjective.

In the disability community there is a range of responses:

I know people whose disability is their sworn enemy. They pour all their time and energy into achieving certain health goals such as walking again or speech or something else. I know folks who have poured their life’s savings into a trip to Europe for holy water to end their diabetes. These folks will often sacrifice other interests and relationships and more to meet their goal—and they could never do anything less.

I know others who see their disability as a ‘fact-that-is’ and whose focus is not on a “cure.” These folks title their goals differently. They tell you they want mobility, communication and solutions usually to support their other interests and relationships. These solutions may take a number of forms. These folks are equally committed to meeting the goals they set for themselves or their children—for instance, I have a friend who is scouring the globe for the most effective voice-output device for her son because he wants to do public speaking.

And, of course, there are many points in between, alongside and around! (And none of these folks can understand for one moment why the other lives the way they do!)

As a nurse my role is to listen to my patients and apply my expertise to THEIR goals.

As a mom I am pretty comfortable with my kids’ diagnoses. They don’t usually bother me much and I get pretty offended when people try to foist cures or lay hands on them. I don’t think they’re broken, just different. I do work hard to find therapies, treatments and accommodations that serve their lives (just try to stop me from getting them, I dare you!) but….

“That serve their lives,” is the key phrase to me.

I read an essay, years ago, that said that “A violet is not an impaired daisy.”

I thought that was perfect—I like both daisies and violets and am privileged to have both in my garden. (If anyone knows where this essay is online I would be happy to link to it. I think I probably read it around 15 years ago, no idea where.)

My comfort level is not always comfortable for others, I have found. On our first visit to the endocrinologist when my daughter was 8ish I wrote on the office questionnaire that other than thyroid issues she had no other health concerns.

The nurse who was weighing and measuring was looking at me oddly and started grilling me.

“Does she have any other health conditions?”

“No, we’ve been very lucky,” I answered.

“Her heart is ok?”

“It’s fine.”

“What about her digestion?” She asked.

“No, she doesn’t have digestive problems.”

“How’s she doing in school?”


“She doesn’t have any other health conditions?”

I shook my head.

Finally she took a deep breath and said, “Does she have any SYNDROMES???”

“Other than Down syndrome?” I asked.

“She DOES have Down syndrome then? Oh, well OK then,” she said, and left the room.

Finally the light dawned and I realized that she thought I didn’t know… or that I was in denial. I laughed through the rest of the appointment and all the way home.

It still makes me chuckle.

While I can’t stand the idea of loss of function and work and pray hard for healing of illnesses like cancer or addictions, I view disability through a different lens.

I think it is perfectly acceptable for healthcare to become a central issue for short periods while someone is in the hospital or recovering from surgery, but I can understand if a person doesn’t want to make it the focus for their life.

What could be better than a crisp, efficient institution? And what could be wrong with days full of daily care and therapies and treatments??

Well, plenty, if you would rather do something else.

Individualize. Everything. Always.

Here’s my list:

Things that need healing:
• Presumption that a one-size-fits-all plan/belief could actually fit anyone!
• Prejudice, unkindness, bad attitudes
• Systems that have forgotten their focus
• Rifts between—well, pretty much anyone!
• Illnesses and losses that get between people and what they want to do with their lives.
• Medical model, we-know-what’s-best-for-you situations.

Tuesday, September 30, 2008

Kennedy-Brownback, Disability and Degree of Difficulty

The Kennedy-Brownback Bill was passed by Congress this past week. This bill requires accurate, up-to-date information about disabilities be given to parents when they receive a pre-natal disability diagnosis. I am glad to hear Congress say that unbiased information matters.

As a nurse, I often find the medical responses to disability the hardest to stomach. Folks in my field should lead the way in ‘knowing better than that.’ It is just mortifying how often they don’t.

A couple of weeks ago it was an MD from Canada talking negatively about Down syndrome.

Then this was in an article in The Chicago Tribune this week:

“Dr. Jacques Abramowicz, co-director of fetal and neonatal medicine at Rush University Medical Center, cautioned against providing a picture of the disorder that is "too rosy."

"Whenever something like this (Down syndrome) is in the media, there is the tendency to make it appear much more beautiful than it is in reality," Abramowicz said.

He says he doesn't tell women what to do, but he stressed that it is a doctor's responsibility to convey the serious health problems that accompany Down syndrome, including higher risks for leukemia, thyroid problems and, later in life, dementia.

"It is extremely difficult to have a baby with Down syndrome," he said.”

Well, this sticks in my craw.

I hope he feels equally responsible to tell parents that people with Down syndrome have a decreased risk of solid tissue tumors like breast cancer, and that ‘thyroid problems’ are experienced by a huge number of people without Down syndrome also (women over 40, for example) and they’re usually pretty easily treated. And I hope that he is sharing that the information about dementia is a risk factor, not a foregone conclusion.

(Like maternal age increases the risk of Down syndrome—yet 60% of all babies with Down syndrome are born to mothers under 30 years old. Maternal age is a risk factor, not an absolute.

The same is true of dementia. There is a higher risk of dementia, but most people with Down syndrome don’t show signs of dementia.

A physician in my area that works with adults with developmental disabilities says that most aging people with Down syndrome who are given a dementia label are misdiagnosed. He evaluates the folks that come to him and “cures” most of their dementia by treating their underlying hypothyroidism, depression, sensory deficits and other issues. He feels that most folks jump to a dementia diagnosis wrongly, and that this is inflating the current statistics.)

Is this doctor telling parents that the existence of Down syndrome is teaching researchers a great deal about Alzheimer’s disease? And that in 40-50 years, when their kids are getting up in age, there will likely be new information and new treatments available for dementia—for all of us?

Is he telling his patients about the advances in medicine, in education and in society that are making life with Down syndrome better than it has ever been? Is he telling them that quality of life of even the ‘lowest functioning’ individuals is better than it has ever been—they live home, they go to school and interact in their communities like never before? Is he telling them that the next 30 years are likely to bring about even more advances?

The studies say that few physicians are. Informed choice requires up-to-date information and includes accurate information about positives as well as accurate information about difficulties.

I hope that physicians aren’t sharing this information because they don’t know it.

Now, let's talk about "difficulty."

The doctor said, “It is very difficult to have a child with Down syndrome.”

These statements always bug me.

First, I always want to ask how he would know that—is he surmising? He’s a neonatologist—has he seen a lot of families raise their kids with Down syndrome? Maybe he has, but if his experience is just with newborns—newborns under duress—is it possible he’s extrapolating a bit? How far from infancy are these extrapolations accurate, do you think?

Then, I wonder, are professionals really implying that if you don’t have a child with Down syndrome your life as a parent will be easy??


Not all kids with Down syndrome are that difficult.

And lots of kids without any diagnosis at all are incredibly difficult to parent. All the bad things you read about in the papers are perpetrated by people. All of those people have parents, and few of those people have a diagnosis of Down syndrome.

I’m just sayin’…

Beyond this, many things in life are difficult. Difficulty gets presented like an important reason to avoid something, yet people routinely choose to do really difficult things and think they are better off because they do.

Running marathons, for example, (finally, a reason for that picture!) is difficult. You have to run—a lot. You have to train incessantly—carving time out of your busy life. You have to sweat. You wear out shoes. You risk injury. Even without injury, you tolerate a ton of discomfort (some might call it pain) as well as boredom, exhaustion, bad smells and bad weather.

It is stressful, even grueling at times. Yet people do it.

There are lots of stories after every marathon about people who hurt themselves and keep running or who stay in the race even though they will finish hours after everyone else has gone home. Yet marathon-running is a respected choice.

Becoming a physician is also difficult. One must graduate from high school with excellent grades, graduate from college with excellent grades, graduate from medical school with excellent grades, be a resident forever—balancing hard work, terrible hours, and classes where you must have—of course—excellent grades.

It’s stressful, even grueling at times. Yet people do it.

They juggle young families so they can finish. They spend every cent their parents ever made and get loans up to their eyeballs. They give up sleep and hobbies and reading the newspaper—for years. It’s a struggle—a highly respected struggle.

People willingly take on huge challenges and would fight you tooth and nail if you tried to stop them.


Because it’s worth it.

The reward is worth the effort. In fact, the struggles make the rewards worth having. Rising above the odds and mastering the challenges is empowering—and fun. It makes us SOMEBODY in our own eyes—and sometimes in others’ as well.

So we choose challenges for ourselves and recommend against them for others? This is disingenuous at best—elitist at worst.

And when we talk to someone about what it’s like to be a runner or a doctor what do they say? If they tell us they love it because of the rewards they are experiencing (good health, winning, prestige, making a difference, saving lives, etc) do we accuse them of painting a rosier picture than they should?

Do we caution others not to listen because they are making running or medicine appear more beautiful than it is?

Um, no. We never do this. Not ever.

So, why would we respond to parents of kids with disabilities this way?

I wonder….

For my other posts about Down syndrome click here.

Photograph courtesy of Philip Greenspun