Thursday, February 19, 2009

Mistakes, I’ve Made A Slew

I’ve been involved in the disability rights movement for a little over 30 years. If I had to say one thing about that time it is this: it is a good thing you can’t get thrown out for making a mistake.

I’ve gotten angry when I should have stayed calm; and I stayed calm when the situation called for rightous anger. I’ve dominated meetings, held my tongue, walked out, stayed, joked, was too serious, took things too literally and not literally enough. I’ve cried tears of sadness and sorrow, when i needed to be strong and was blindly ignorant of people’s feelings when I should have been more sensitive.

If there was a mistake to make, I made it. But, it was how I learned. I still have things to learn, but after so many years in the movement, my peers have taught me a lot. I think one of the most important lessons I’ve learned is that risk taking, and screwing up, come with the territory.

One of my elders often said to me, “Some people live and learn; and some people just live... which will you be?” Of course, I wanted to be the person who would live and learn. But this learning thing is hard. I was going to have to deal with my mistakes, errors, misjudgements, stubbornness, arrogance and my own insecurities.

Now, inexperience doesn’t mean that you cannot be a good advocate any more than 30 years in the movement means you will do things flawlessly. Each situation calls for certain skills we may or may not possess. It is a continual struggle to balance what we know with the situation at hand. That is a difficult task if you're going it alone. However, if you get involved in grassroots organizing the going is easier and one can learn a whole lot more.

As a young advocate, I had to overcome my fear, face the fact that I was going to say or do something that wasn’t right. Luckily, I was part of a group of supportive peole who worked together. Rather than making me feel foolish, or kick me out, they explained what I had yet to learn; they guided me, suggested alternatives, encouraged me to try again and celebrated each one of my learning milestones.

When I began advocating for my daughter I thought every issue I had with the school district meant a take-no-prisoners war. IEP meetings were more like hand-to-hand, full bayonette attacks on “those people”. After a while I learned how to control my behavior; how to negotiate and when to pull out the bayonettes. A few years after that, I never needed to pull out the bayonette; they knew I was a parent that would do what was necessary to assure my daughter received what the federal law promised. They conceeded to my “requests” for services.

You can learn a lot by just hanging around for 30 years. You can learn even more if you stick your neck out and try to make a difference. Don’t expect perfection. Don’t be intimidated by a fear of making a mistake. Do be self reflective and willing to accept a job not-too-well-done, and learn from it. President Obama in his first few weeks in office admitted to making several mistakes. Personally, I found it refreshing that he was willing to be self-critical and honest; then move on, a little smarter. I like a person who can admit they are not infallable; i trust him more now than before.

When I was doing parent advocacy training, I would encourage parents to try one new thing at a school meeting; to shake everyone’s hand and look them in the eye when they entered the room; to write notes about what theysaw their child doing at home and share it at the meeting; to know their bottom line and not settle for less, etc. Why? Because it helps equalize the roles between “just the parent” and the professionals.

That’s is why grassroots activists can flourish in a group. There is a synergy combining everyone’s experiences. Young people have energy and enthusiasm on their side that can overcome older person’s exhaustion. An older person can guide an unbridled person’s anger. All of us are smarter and more effective than one of us.

It is not what we do,
but also what we do not do,
for which we are accountable. - Moliere

Saturday, February 7, 2009

The "Other" Other Unemployment Rate

Ok, I am officially pissed; royally, utterly and angrily pissed off.

Today, (February 6, 2009) the Wall Street Journal featured an article titled, "The Other Unemployment Rate". In part, it stated:

The Labor Department’s official unemployment rate hit 7.6% in January, and its jump from 4.9% a year earlier marks the largest annual increase in the unemployment rate since 1975.But the government’s broader measure of unemployment hit a more stunning level: 13.9%, up from 13.5% in December.

The figure, which largely accounts for people who have stopped looking for work or can’t find full-time jobs, is the highest since the Labor Department started the data series in 1994. It’s just shy of a discontinued and even broader measure that hit 15% in late 1982, when the official unemployment rate was 10.8%

All these stories of doom and gloom about the unemployment rate hitting 7, 10, maybe even 15%. Oh, we are definitely heading in that direction. We may even hit the 20% unemployment rates of the Great Depression.

It's a national crisis. It consumes the front pages of every newspaper. Television and radio analysts cannot let 10 minutes pass without mentioning it. Throw your hands in the air and start screaming, "The sky is falling... the sky is falling; and it is.

Yet for decades the unemployment rate for working aged adults who want to work has remained fairly and dismally steady since the passage of the Americans with Disabilities Act.

A 2004 survey found that only 35% of working-age persons with disabilities are in fact employed compared to an employment rate of 78% in the rest of the population. Two-thirds of unemployed respondents with disabilities said they would like to work but could not find jobs.

For graduates of four-year colleges, the employment rate, for both men and women, is 89.9%. For college graduates with disabilities, the employment rate is 50.6%.

Where are the front page stories about these stats of the other, other unemployed? Where are the pundits and analysts screaming about this national outrage? Of course there are none. They are silent.

Woman pounding her fists on the table and fire shooting out of her head.So yes, I am more than a little pissed off that my society views me and my kind as worthless. So worthless, in fact, we don't even get counted in the climbing unemployment rates. We don't even get factored into the people who have stopped looking for jobs. We are invisible.

How can any federal stimulus package designed to stir the economy ignore people with disabilities in its plan.

Well, there was a little money initially; not enough, but some. Now the stimulus bill passed by the House that contained $13 billion for IDEA, $500 million for Vocational Rehabilitation, and $110 million for Independent Living are in jeopardy. Senators are now considering The Economic Stimulus bill; and all of the above provisions are prime targets for cutting!

Call to Action:

The American Association of People with Disabilities wants you to take this IMMEDIATE ACTION.

Call 202-224-3121 and ask for your Senators' offices and leave the message below:

"I urge you to keep funding for Vocational Rehabilitation, Independent Living and IDEA in the Economic Stimulus bill. People with disabilities deserve the opportunity to benefit from the economic stimulus package. With EVERY STATE facing looming budget deficits, the funding for these programs in the Economic Stimulus bill will offset any state budget cuts that would hurt people with disabilities and also ensure that people with disabilities are not left behind."

If you're not pissed... you're not paying attention!

It's not enough. Even what they have proposed is not enough. I want more.

  • I want any contractor with a federal or state contract to have a certain percentage of their workforce be someone with a disability. Affirmative action? Damn straight!
  • I want universal single payer national healthcare, so people with disabilities don't have to worry about losing their healthcare if they get a job, and employers won't be burdened by the cost of healthcare and will be able to employ more people... more people more stimulus.
  • I want equal pay for equal work.
  • I want a career ladder program for people with disabilities, so they can be considered for promotions.
  • I want those archaic statutes in the Fair Labor Standards Act that allow companies pay people with disabilities less wages for the same work amended or made illegal.
  • I want the ADA amended so that the public accommodation portion of the law actually fines violators who are inaccessible, rather than having to file a lawsuit against the business/agency. Like speeding, don't comply, get a ticket.
  • I want every freaking state run institution in the country shut down and the money used to "care" for that person follow the individual into a community based setting. Just think of all the housing starts that would stimulate.
  • Oh, I could go on, but I think I just popped my migraine cork and I must stop.

I thought if I wrote this all this down I could "talk myself down," like Rachael Maddow; it didn't help. I'm still pissed, maybe even more so. (She writes while reaching for her Zomig and Xanax.)

Tuesday, February 3, 2009

I Google

Sometimes when my brain is too fried to think, or nothing is on TV, I Google. I usually put in the words "disability OR disabilities" and click the News search engine. Sometimes I add a modifier: murder, child, mother, protest, etc. Recently, I found this article in the Salt Lake Tribune by Linda Smith.

I read it; I read it again and I still don't know what to think of it. What do you think of it?

Certain legislators had planned to sponsor legislation to "ban abortion in Utah, period, end of story." Now they are focusing on legislation to create a legal defense fund for a future court battle. They should redirect these efforts.

Most women consider abortion because they worry about the life they can give the child. We could deter abortions by addressing these fears.

Consider the couple who finds that their baby will be born with Down syndrome, the most common genetic anomaly. Most (more than 80 percent nationally) choose to terminate that pregnancy rather than raise a child with intellectual disabilities. What can we do to dissuade this choice?

Today I can advise: "Don't worry, your child will get an education -- but in the worst-funded school system in the country. As an adult, he will be automatically eligible for Supplemental Security Income. This will allow him to live at the poverty level. He'll also be eligible for Medicaid.

"Down syndrome often includes dental abnormalities and vision impairments. Today in Utah we don't offer full dental benefits on Medicaid. Instead of filling cavities or doing root canals, we pull teeth. I guess we figure the disabled won't notice if they can't chew. And they look different anyway.

"We don't provide vision services, either, which can make it difficult to read -- maybe we figure they don't read anyway. Our Medicaid funding is the second lowest in the nation."

The couple might inquire: "Isn't it possible he could have a better quality of life? I've heard some children with Down syndrome hold down jobs and live independently."

I could report: "Yes! An education and a job - are possible. My 23-year-old son took courses at Salt Lake Community College and got an associate credential in child development. He has a job as a preschool aide, which he loves. But if a person with a disability needs more help, say regular job coaching, there is a waiting list of thousands of people for those services.

"This waiting list also limits help to live in the community. Usually adults get housing services only after their parents die and they would otherwise be homeless."

Wouldn't it be better if I could say: "In Utah we put the interests of the neediest first. Even in tough financial times, we don't eliminate important medical, educational and social services for people with disabilities who truly cannot fend for themselves without our help."

Of course, a woman may also consider abortion when her own financial circumstances are insecure. What will we say to her? Two years, maximum, of cash assistance if she is poor and without an income. Maybe subsidized child care … maybe not. No state-supported preschool. And, again, the worst-funded public education system in the nation.

Wouldn't it be better if we could say: "In Utah we invest in the future by putting our children first. We don't just give lip service to family values -- we put our money where our mouth is."

The rest of the nation permits this temporary assistance for up to five years instead of two, and economist Robert Reich recommends that this be extended during the current financial crisis. Wouldn't it be reassuring if Utah lawmakers also wanted to put poor children first?

In these fiscally insecure times, the idea that we should impose across-the-board cuts on all programs raises serious concerns about our moral fiber. Instead, we should examine our priorities and not abandon the weakest. We should fund investments in the future. This is an opportunity to let the public know that Utah invests in the future for its children and cares for the neediest.

Linda Smith is a professor at the S.J. Quinney College of Law at the University of Utah, where she directs the clinical program and has taught poverty law. She has a 23-year-old son with Down syndrome and works with Special Olympics.