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?

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

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.

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.

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???

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.

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!

Sigh…

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!

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.

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.