Say It Isn't So, Mr. President

Actually, I know it is so... Last night on Jay Leno the President of the United States bemoaned his poor bowling skill saying that "it was as if he were in Special Olympics or something."

Sigh.

And sensing there had been a gaffe his staff stated to somebody that the President really respects Special Olympics.

Sigh again...

See, here's the deal Mr. President,

I know it was off hand and unintentional. I know you nearly never make disparaging remarks about races, genders, creeds, sexual orientations or other differences. I know that you support people with disabilities in many, many ways. And you never talk about diversity without including those with disabilities.

And that's the point.

Ableism is so ingrained in our society that even our FRIENDS don't recognize it.

It's not that this was the worst gaffe in the world, and heaven knows it wasn't the worst we've ever heard--nor will it be the last, I'm sure.

It does, however, have more.... cachet... shall we say, coming from the president.

I am only speaking for myself when I say this, I am willing to forgive, but I do have something to ask:

Do something about this that matters.

There are a ton of opportunities this month alone to take a stand that could turn this negative moment into something that makes things better in our culture for people with disabilities.

Leverage this error into opportunity. Please.

Tomorrow is 3/21, World Down Syndrome Day, a day to celebrate Down syndrome, (also know as Trisomy 21.)

Too soon?

That's ok, there's plenty more:

3/31 is Spread the Word to End the Word day--a day to unite to ask for respectful language about disability--specifically to teach about the hurtful effect of "the R-word." It is sponsored by Special Olympics and there are cool t-shirts!

There are bills coming before congress soon with the power to build new possibility for those with disabilities like the Community Choice Act (scheduled for 3/24 last I heard), the CLASS Act... and others.

The president of the AUCD gave testimony before the HELP committee yesterday about the value of the University Centers of Excellence on Disability and the Leadership Education in Neurodevelopmental (and related) Disabilities programs that they run.

And that's just what I can come up in my bleary early morning state.

Make a statement, not an apology to a program--great though it is--make a statement that brings recognition and respect to people with disabilities.

Help the disability community by turning this stumbling block into a stepping stone (or better yet, a ramp!)

Picture from here.

Waiting for a Hero--Disability and Leadership

Back a few years ago I attended a rally for IDEA in Washington, DC. It was a big deal—a roadtrip to meet advocates from around the country and visit with our legislators.

While I was there I had a conversation with a group of fellow parents of children with disabilities. In the course of our conversation one woman said, “What the disability movement really needs is a hero.”

I didn’t think too much about it when she said it, but since then I have developed a real opinion.

I was in Washington this week for the Disability Policy Seminar. I spent Sunday and Monday learning tons of information about the laws that affect people with disabilities and I was in a room full of heroes: self-advocates, advocates, professionals, and parents, lobbyists and grass-roots leaders from around the country—all of whom work tirelessly to build success for people with disabilities. And for everyone who was here there are hundreds more back in our home towns also doing this good work.

I think though that my friend wanted a super-hero. Someone to fly in and rescue us (preferably someone with a snappy costume, special effects and a memorable soundtrack!)

And with this I cannot agree.

I have seen the ‘rescuer’ model of advocacy many times and I do not trust it.

It usually goes something like this: A group of concerned people will gather to discuss a pressing need and one person steps up and says (booming voice optional), “I will take care of it!!!!”

They leave the room, work ‘behind the scenes’ on the issue and at the next meeting stand up and say, “Problem solved!!!”

Sounds great, who wouldn’t want that?

Me.

Naturally.

Have you seen the movie Superman Returns?

Superman, after many years of being THE ANSWER for the people of Metropolis, left the galaxy for a long sabbatical on Krypton. Without him, Metropolis fell apart.

It seems that people had stopped learning to swim because they knew they would be rescued. The city didn’t focus on crime-reduction because they didn’t have to. Kids didn’t know to tie their balloons to their wrists…. Mobsters ran amuck… Kittens went willy-nilly up trees…

It was a mess!

My friend had the real-life equivalent of this happen in her school district. They felt lucky because they had an administrator who provided extraordinary support for their special ed parent group. In September this administrator retired to South Carolina—she might as well be on Krypton! Without her they've found that their group has no mechanism to get anything done.

They do not have relationships with anyone else in their district, they have no working knowledge of district processes, and there is no replacement hero stepping up to help them.

They are in a tough spot they didn’t foresee. Because they were successful they believed they were empowered. They were not. They were dependent all along.

A rescue may be just what you need sometimes, but it is not leadership

You may want to ask yourself how your own situations measure up. Are you or your organization overly dependent on a superhero? What can you do to empower yourselves? You want to succeed WITH your superhero, not have them succeed for you.

Another popular myth in the Developmental Disability world is that leadership is done by people who have “arrived” at some magical point. Parents promise to attempt leadership when their kids are older, professionals say they will lead when their careers are established (or once they have retired.)

Sounds reasonable.

Who could object to this?

Guess who!

Me.

Surprise, surprise!

Leadership = Influence.

People who do not develop a habit of influence will NOT suddenly become leaders at some point down the road.

Part of our problem is that we have a tendency toward all or nothing thinking. Somehow we believe that if we can’t run for president we can’t do anything at all.

The truth is that leadership is a spectrum and there are multitudes of small, medium and large actions that any person can make to influence the people and situations around them.

The picture above is a group of LEND Trainees who attended the Disability Policy Seminar. Together we learned about the policies that affect people with disabilities. On Tuesday many of us went to Capitol Hill to enlist our legislators’ support.

The issues that people with disabilities face in 2008 loom large. The good news is: everyone can make a difference.

To see really good summaries of the disability-related bills that will be before congress this year click HERE.

To read an excellent essay about taking a stand (not specifically about disability issues but absolutely applicable) click HERE.

Virtual Advocacy--Disability Advocacy Skills for this Millenium

My youngest child was born in 1993 and within a few minutes of her birth we were informed that she has Down syndrome. Those few words changed my life.

I had left my house on that November morning to have a scheduled C-section, my 4 year old daughter and my 2 year old son were at my mother-in-law’s. It seemed strange and scary to be going to the hospital without being in labor. It was just so different from my other deliveries—little did I know just how different it would be.

Until this point, things had been pretty ordinary—I’d lived a pretty straight-line life. I grew up in a suburban home, went through school, went to college, graduated, fell in love, got married, and had a couple kids. I was a part-time nurse, most of the time mom, active in play-groups and my church, voted in most elections and obeyed most speed limits. I argued the benefits of breast vs. bottle, cloth diapers vs. disposable and paper vs. plastic and worried that I was wasting my life. I didn’t know what I wanted to do when I grew up.

Jenn’s birth gave me focus—cleared away any uncertainty about who I was and what I was supposed to do with my life. When Jenn arrived I knew that preparing her for the world and the world for her was my calling.

Some people thought I was nearly an expert on disability already. After all, I had volunteered teaching religious education to kids with disabilities when I was in college, had shared an apartment after college with one of my high school friends who has Cerebral Palsy, and I had been a nurse for 10 years by that time. The truth was though that I knew the things you know about Down syndrome when you don’t know anything about Down syndrome!

Acutely aware of my ignorance I started reading—a book a day—for months. I have always been a fast reader, but my anxiety threw me into overdrive. I joined the local Down syndrome parent group, and I searched on line. The unfortunate thing was that much of the information I gathered would not be pertinent to my daughter for years, yet I didn’t feel that I had a choice. I had to keep learning so I wouldn’t miss anything.

Finally one day I received a flier for a workshop where a woman named Kathy McCarthy-Proulx from an agency called The Advocacy Center would teach Hands-on-Advocacy. I felt like I’d ‘seen the light!’ It dawned on me that the reason my search for more information could never end was because I didn’t just need information—I needed skills as well. If I acquired some skills then maybe I could relax. Maybe I could be confident that I would be able to access information and support when I needed it. Maybe I could afford to breathe—and maybe I could even read a novel now and then!

I took that class and indeed, my desperation lessened and my learning became more focused. Then I took one about Early Intervention (the education program for children under 5), then another and another. In addition to information and skills I met amazing people. The folks that taught these workshops were mostly parents of children with disabilities themselves. Their knowledge and experience from years in the trenches and their generosity in sharing what they knew was invaluable—I wanted to be just like them.

My fellow attendees were also a great group of people, eager to learn and grow and make things better for their kids. These folks became a network of support and friendship that I still rely on today.

Eventually I moved from gathering information specific to my daughter to wanting to help others. I learned about laws and systems and how to affect them. I became the president of my local Down syndrome group. And I kept attending periodic workshops culminating in 2002 with Partners in Policymaking.

After graduating from Partners I was an energetic advocate. I helped organize a statewide rally about IDEA (the Individuals with Disabilities Education Act), helped form a statewide disability coalition, attended rallies in Washington D.C., testified before my county government, and presented at several workshops among other things. But after a few years of this I became very tired and very discouraged.

I was tired of writing letters, visiting legislators, making all sorts of presentations—telling people (who should know better) that they should care—over and over and over again. I was frustrated that in spite of our best efforts IDEA was finally reauthorized as a weaker law than it had been before, big business was constantly lobbying to weaken the ADA, and people I know continued to face discrimination in education, employment, transportation and more, and much of the world remained disinterested, or even hostile.

I knew advocates who had been fighting these same frustrating battles for decades, and the thought of that was just depressing.

I was working myself to the bone and so was everyone else. What was missing?

It seemed to me that the disability movement was stuck in a loop:

We lack influence.

At first glance it appears that we lack influence because we lack money.

There is more money spent on health and human services than ever before. This money does get people with disabilities through the day, providing daily care.

However, this money does not build anything that lasts beyond today; it does not create a future.

And the reason we lack ‘building money’ is because the country has different priorities—in other words, because we lack influence!

We were caught in the spin cycle and I could see no real way to change this. There will always be a war or a hurricane or some other crisis to consume the headlines and the budget. It made me weary (and dizzy) just to think about it.

We need something more.

I think one of the drastically under-explored advocacy tools available in 2008 like never before is Virtual Advocacy—on-line advocacy.

It can be free.

It’s viral’ as my web 2.0 friends say repeatedly (they mean it spreads like wildfire!)

It crosses areas that are traditionally unconnected—clinicians and parents and policymakers could follow the same blogs for example.

Recently I received notification of a pretty significant disability concern from a friend of mine whose only personal connection to the disability world is me—prior to the internet she would never have happened across this info, ever.

There are tons of websites dedicated to improving non-profit success through web initiatives like Have Fun-Do Good and Beth Kantor's blog, or Katya's Non-Profit Marketing Blog.

There is a NY family who has started a “No R-word” Facebook profile.

I have e-lists that I feed daily, I blog, I follow other sources of info regularly and pass that along to anyone who might have an intersecting interest (my school district and many of the tax-concerned parents I know were extremely interested in the effect that the proposed Medicaid reg changes could have on our school taxes, for example—and all it took was a couple of introductory paragraphs and pasting in a link.)

For the past several months I have been the Virtual Trainee for the AUCD, attempting to provide a connection between the AUCD trainees around the country and the AUCD itself on-line.

I am sure there are other areas where we, the disability advocates, could have a presence if we thought about it. (My kids rolled their eyes when I propose creating an Ava-Terri, but why not?)

(UPDATE: for an a link of what can happen when someone with a disability puts their issue out on the web click here.)

I would be interested in exploring innovative ways to combine disability advocacy and web applications…. How can we expand our visibility, our credibility, and connections with “our issues” in new ways? What are your thoughts? Where could we go that no one has gone before?

(Image from here.)

Gap!

Futurist Ed Barlow spoke at the AUCD conference in November. He is a person with a background in management and experience in healthcare, business, higher education and consulting who monitors information about the things that are happening in business, the economy, technology, etc and tries to predict future trends.

This was the first time I had heard a ‘futurist’ speak at a disability conference and it was both fascinating and disconcerting. In a rapid-fire delivery style we heard his predictions for a world that will be changing drastically and becoming very different from today.

He spoke of a world where successful people speak Mandarin Chinese and maintain what he calls a mental desktop where they track changes and trends in a number of areas—global areas—daily.

He believes that people will need the ability to assess the global environment, predict needs, learn the information that will help them meet the needs they recognized, plan and respond accordingly while being aware of all the things that are continuing to advance while they work, in order to be successful. The image I have of this is a person sitting at a console watching at least 3 screens each with different stock information flashing at the top, a running line of information going across the bottoms and a another story being presented in the middle—and watching and retaining all of this at once.

He said that by the early 1970s human knowledge was doubling every 6 years, by the year 2012 it is expected to be doubling every year.

He predicted that the workplace of tomorrow would value skills more than degrees, that far more workers will work on a contract basis and that employers will no longer offer health insurance as a benefit (he made no mention of who would.)

He feels that most people will not get a university education and that most will attend community colleges for skill-based educations. (Did I just say that people will need more abstract and sophisticated learning abilities and that their education will be shorter and more technical? Yup, that’s what the man said.)

He spoke about population trends, the aging of America, the ethnic demographics of tomorrow, the style differences between generations and different business accountability tools that he believes will be helpful. He also touched on advances in technology and learning that he expects to have a great impact on the world of tomorrow.

Listening to the presentation all I could envision was an ever widening gap between the haves and have-nots in our society. I could envision the upper echelon of society moving into the future at breakneck speed, and everyone else struggling to keep up while folks with disabilities grow further and further and further away from the benefits of participation.

Seriously, is anyone teaching our kids Mandarin Chinese? Is anyone even teaching their caregivers Mandarin Chinese? How about their caregivers’ employers?

In my opinion it will take a feat of engineering to bridge this widening gap (think Millau Viaduct!) If he is correct we have a lot of work to do to establish a role for people with disabilities to circumvent economic segregation and keep people with disabilities connected within the society of tomorrow.

I think Universal Design (applied to all areas of life), the leveling of playing fields by extensive application of technology, purposeful, planned relationship-building in our communities and strengthened connections between people who have disabilities and people in leadership are some of the building blocks we will need to succeed.

What are your thoughts?

I would love to hear your ideas! Post your ideas in a comment below.

Listen to the Canary

A few years back our school district went through some administrative changes. Within weeks of the change the parents of children with disabilities were alarmed when they were notified that the district had changed the Education Plans of all of the children who receive summer services. These changes were made without holding a single IEP meeting— meetings that are required by federal law.

As the next few years unfolded many, many more problems came to light about the way our district was being administered. The Special Ed parents knew of the problems first. We often joked that our population was like the proverbial canary in the mine shaft.

Before the invention of sophisticated chemical testing equipment coal miners would bring a canary with them when they descended into deep mines. The canary would indicate the presence of poisonous fumes before the miners’ lives were in danger. As long as the canary sang the miners knew they would be all right.

In November I heard Michael Collins from the National Organization on Disability present as part of a panel at the Association of University Centers on Disability annual meeting. He was speaking about his organization’s priority of Emergency Preparedness. Collins stated, “People with disabilities are like the canary in the mineshaft—AND if they can keep us safe, or get us out, they can do it for anybody.”

This stands to reason. If our environments are accessible for people with disabilities they are accessible for all. While steps challenge many, a ramp works for everyone. How many of us have benefited from elevators and automatic doors? And who hasn’t followed the closed captioning when trying to watch the news in a crowded airport or catch a game in a noisy bar? If it works for the people with disabilities everyone succeeds.

It also seems to follow that it if we can meet the challenge of educating the kids with learning needs, we can educate anyone. And if we can address the healthcare needs of folks with significant disabilities we are able to provide care for anyone.

The same can be said for housing, transportation, civil rights, employment and more. If our systems can succeed with people with disabilities they can accommodate anyone. The Universal Design principles that architects use to create accessible spaces can be applied far beyond the accessibility of physical environments.

In my experience this even holds true for cultural issues. For example, if people with disabilities (including cognitive disabilities) are well integrated into a community, people with other differences are usually welcomed as well.

Conversely, when our systems have problems the ill effects are first noticeable to people with disabilities as well. Like the canary in the mineshaft the experiences of people with disabilities are often the first indicators of both society’s successes and its failures.

(Thanks to my friend Kathy who made me the miniature canary in the cage in answer to my picture dilemma!)