Archives for September 2013

The grace to embrace

[Author’s Note: This opening story is included in my upcoming book My Father’s Eyes.]

Dog cat umbrellaIt was a Saturday afternoon and my Uncle Melrose and I were at McDonald’s, waiting in line to order hamburgers. As usual my uncle, who had a profound intellectual disability, was ecstatic to be at his favorite restaurant. He liked going out, he liked hamburgers and he liked being around children. There were always lots of kids at this particular McDonald’s.

Uncle Melrose got so excited, so exuberant while we were waiting to order that he reached out and put his arms around the man standing in front of him.

I, of course, was horrified. “Let go!” I yelled, afraid the man would be angry.

To my surprise, the man turned around and smiled and said, “That’s okay” as I helped Melrose disengage from his embrace.

It was the only time in the 10 years that I knew my uncle that he created a scene in public, and all things considered, it wasn’t much of a scene.

The benefits of visibility

It certainly wasn’t what many families who have disabled members face. A recent article in Disability Scoop, which bills itself as the Premier Source for Disability News, told of a family with a child who became boisterous at a restaurant. The child had a disability. Another diner, a compassionate one, paid the family’s bill.

These experiences are not only heartwarming, they are a testament to the fact that people are gaining greater understanding of individuals with disabilities. With the mainstreaming of students with disabilities in the public schools, with more employment opportunities for those with disabilities, and with greater visibility of this population, people are more compassionate and understanding.

I have often wondered if the man we encountered at McDonald’s worked with people like my uncle or if he had a family member with a disability. He was a rarity at the time – more than 15 years ago. Most people we encountered just stared at Uncle Melrose and kept their distance.

I used to get annoyed at their apparent insensitivity, but eventually I learned to ignore it. I was usually so wrapped up in helping Uncle Melrose that I didn’t have time to worry about how others were reacting.

Yesterday, a friend asked me what I would tell someone if they were unexpectedly hugged by a person with a disability. I told her I hoped they would have the grace to hug them back.

It’s what you do with what you’ve got that matters

Does a low IQ score matter? That’s the issue that Licensed Professional Clinical Counselor David Joel Miller discusses in this guest post on changes in the way IQ is being viewed. As he concludes, it can be both good news and bad for people with intellectual disabilities.

By David Joel Miller

There has been a lot of misunderstanding about IQ Scores, what they mean and just how significant a low IQ score may be. Some of the things we thought we knew have been challenged recently.

One definition of an IQ score is “The number of marks you make correctly on a piece of paper divided by your age.” We expect younger people to get lower scores and older people to get higher scores. What this does not tell us is what those scores are really measuring and what difference does it make.

The conventional wisdom has been that people with low IQ scores are less mentally able.

This presumes that there are no biases in the test. Most test manufacturers or publishers work long and hard to eliminate biases. Still we know that culture matters. Most IQ tests rely heavily on words, so if you speak two or more languages but as a result know fewer words in each language you speak you might score lower.

The presumption in the past has been that the higher you score on the IQ test the smarter you were and the better you should do at life. For someone with a low IQ we assumed that learning things would be harder.

This does not explain how someone with a low IQ score might be very good at a skill like music or a sport while the person with a high IQ might fail at those same skills.

Clearly IQ is not the whole story.

The mean IQ score is set at 100. The way the mathematics work is that the majority of people get scores from 85 to 115. That range is considered normal. So mix children with IQ scores of 85 and 115 together in a class and the teacher might have difficulty telling which is which, without reference to their test scores.

But if you get a score of 84, now we say you have “Borderline intellectual function.” If the 30 point differences between “normal” don’t make much difference how does that one point difference between 84 and 85 make so much difference.

The truth is it doesn’t.

What matters is what people do with the intelligence they have. So just like the really heavy kid may be no good at football and the skinny little kid may be able to run really fast with the ball so too do differences appear in how people use the intellectual resources they have.

The trend in the DSM-5 to move towards dimensional diagnosis rather than categories has changed our thinking from classifying mental retardation based on IQ scores to looking at how that low IQ is affecting the person.

So if the person is having difficulty with adaptive functioning because of their intellectual disability they get diagnosed with an intellectual disability disorder. If they are doing a good job of functioning despite a low IQ score they just may not get a diagnosis.

I realize this will take a while for the popular culture to catch up. It is no longer your I. Q. score that matters but what you do with what you got.

This shift by therapists and the APA will also cause ripples in all that special education and those government programs that are still using IQ scores as a basis for services.

All in all I see good and bad in this. Good if it reduces stigma against people simply because of the score they got on one piece of paper and bad if as a result of new definitions some people who need help get screened out.

Only time will tell.

So till then stop saying people have mental retardation and look to see if they are having difficulty coping with their life because of an intellectual disability or are they just sad, anxious or upset about life events like the rest of us.

David Joel Miller is a Licensed Marriage and Family Therapist and a Licensed Professional Clinical Counselor in Fresno, CA.

Civil rights isn’t just about race

Fred Maahs, Chair of the Board of the American Association of People with Disabilities

Fred Maahs, Chair of the Board of the American Association of People with Disabilities*

It was great to see that all kinds of people were represented in the 50th anniversary of Martin Luther King’s March on Washington.

Fred Maahs, chair of the American Association of People with Disabilities, spoke eloquently on behalf of the Americans he represents.

Here, republished by permission of AAPD, are his remarks from Wednesday, August 28:

I am honored and humbled to be here with all of you today.  My name is Fred Maahs and I am a proud American with a disability.

Thirty-three years ago, just a few days before starting college, I dove from a boat and hit a sand bar in a foot of water. I broke my neck and was paralyzed from the chest down. In that instant, my life and the lives of my family changed forever.

I spent seven months in the hospital undergoing intense physical therapy, learning how to be independent in a wheelchair. But when I left the hospital to begin my new life, college remained out of reach. The campus was not accessible.I thought that the doors to a fulfilling life had slammed shut.

It was 10 years before the Americans with Disabilities Act. I was unable to access most public buildings. I was banned from most public swimming pools. I was told there were no jobs for people like me. Heck, I couldn’t even get on a bus.

It was rare to see a person like me out in the community. We were referred to as “shut ins.”

Fortunately, Widener University in Delaware was welcoming. I helped adapt the campus to make it more accessible and I was the first chair user to attend and graduate.

I found employment and worked my way through college. My first job was in a two-story building with no elevator–and yes–my office was on the second floor.  So, every day I was carried, chair and all, up the stairs to get to work.

In the years since my accident, I have dedicated myself to expanding equal opportunity for all Americans.

Today, I do this as Chair of the American Association of People with Disabilities, the nation’s largest disability rights organization. AAPD for short.

I also do this in my role as Vice President of the Comcast Foundation.  I am proud of our work at Comcast, where diversity has always been an important part of our culture.

Today Comcast and NBC Universal help provide equal access to all Americans by helping low -income families conquer the digital divide through our Internet Essentials program. We also ensure our products are accessible to everyone – from historic closed captioning to new innovations like voice activated remote control.

At AAPD, we work to open the doors of freedom for Americans with disabilities, and we need your help to pass the Disability Treaty. The Treaty will expand the spirit of the Americans with Disabilities Act across the globe, level the playing field for U.S. businesses working abroad, and increase access for U.S. citizens traveling overseas.

Help us make a difference –If you have a smart phone take it out and tweet #IsupportCRPD.  #IsupportCRPD.

We will never know how many, but I can say with absolute certainty there were people who wanted to join the March on Washington 50 years ago, but couldn’t because participating was either too difficult or simply impossible for people like me. There was just no access.

Looking back, it is fair to say that Martin Luther King, Jr. was the father of our movement as well. Dr. King had a dream. He had a dream about equality and dignity for all people.

Yet for millions of people with disabilities, this dream remains out of reach. 8 in 10 of us don’t have jobs. Most will never know what it means to work even if we are ready, willing, and qualified.

It remains legal to pay people with disabilities far less than minimum wage in the United States. Today, I share Dr. King’s dream. I dream of a world that does not hold anyone back.

People with disabilities represent all races, ethnicities, religions, sexual orientations, and genders. We represent nearly 20 percent of the U.S. population. We have seen a lot of progress, but, like all civil rights movements, we have much more to do.

I call on everyone here today to continue to stand up for and defend the rights of people with disabilities. Americans are guaranteed certain inalienable rights and the right to pursue our dreams. Our duty as citizens is to help one another achieve those dreams.

Please go to AAPD.com/March and see what we can do together when we dream together.

*Photo courtesy American Association of People with Disabilities