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

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.