Reds' batboy with Down's Syndrome

A friend of mine posted this clip from ESPN to his facebook page today, about Ted Kremer, a 30-year old man with Down's Syndrome who is a batboy for the Cincinnati Reds. The Reds crushed the Marlins, which made Ted the honorary batboy quite happy, as the clip shows quite well.

This brings up so many of the issues we have been discussing in class lately. On the positive side, here's a man with Down's Syndrome who is clearly a huge fan of the Reds, and in this case his disability is affording him a privilege he likely would not otherwise have had, even if he had no disability. It is obvious that he is having a wonderful time and loves his job.

But then the announcer talks. He calls Kremer a "kid," they show a few clips of Kremer hugging players, then finishes by saying "this is what's good about sports." To be fair, sports announcers often call players "kids," though it seems worse when they just told us that Kremer was 30 years old. Also, while I appreciate the sentiment that Kremer has been given a lifetime opportunity and is clearly enjoying the fruits of his fandom, the patronizing attitude taken by the announcer is troublesome if also typical. Sports seems to be the primary aspect of our culture in which we easily recognize that a person with developmental disabilities often cannot perform at the same level as the best athletes, yet we use that disability for moments of collective empathy. For better or worse, we seem to have established sports as an appropriate avenue for socially acceptable condescension in the name of empathy. But maybe that's okay? My feelings on this matter are often mixed.

EDIT: Here's a link to an article about the same game. It has some of the same attitudes expressed in the video, but in a more positive light.

Echoing Meadows makes The Post

Today's edition of The Post has a front page article about Echoing Meadows. Though I have known where Echoing Meadows was located for awhile, I honestly did not know much about what went on there. (I can't say I know a whole lot more after reading the issue of the Post, but that's almost to be expected.) Still, I did learn that most of the people who live at the house have intellectual disabilities--many with mental illness as well--and most will be there for the majority of their lives, though a few do move on to more independent living.

It was encouraging to hear the staff talk about "habilitation" instead of "rehabilitation," primarily because it means they are conscious of and discussing the needs of the people they are helping. I'm not sure the terms themselves matter as much as the awareness of need. It was also good to hear about the bonds formed between staff and residents; in residential settings it sometimes seems like there is little connection between residents and staff, which can lead to abuses. I was a bit concerned when the article reported that occasionally staff would have a resident over for a holiday or take them out for a movie or show on a day off. Alternately, the article portrays the place as a professional but informal facility, so in that context this might seem more normal. The only troubling issue with the article itself was that the author kept alternating between the terms "residents" and "patients." I have no idea why she was using the term "patients," beyond an ignorance of the social work field. Where some people might consider them "clients", the term "residents" is both accurate and dignified.

High School Baseball Player

I found this video recently about Gregg Hauck, a kid in high school who was born with limited use of his right arm. He plays varsity baseball for his school team, where he is claimed to be one of the best outfielders in the county. He has adapted well to his arm's limitation: he catches the ball with the glove on his left hand, then smoothly transitions to using his right hand to hold the glove while his now-free left hand grabs the ball and throws it back to the infield.

This video is inspiring for its portrayal of the human ability to adapt and overcome adversity and limitation. I was surprised, however, to hear Hauck talk about being harassed by players and even parents on opposing teams. I remember this kind of nonsense happening at my peewee league games, but I would like to think that people were more enlightened today, particularly concerning players with disabilities. Despite this, I was again impressed that Hauck intentionally chooses to ignore their insensitive words and to focus on the game. Strength of character as well as strength of will--Hauck sounds like a great kid.

Open Letter from former SS Commissioners

While I missed the stories that prompted this response, I recently stumbled upon this letter from several former commissioners of the Social Security Administration wherein they refute some of the reporting done by NPR and This American Life concerning the increase of the SSI and DI programs in recent years. Reading their letter makes me want to hear the full stories as reported by NPR, which I typically accept as a reputable news source.

Having worked in a rural homeless shelter for 5 years, I am keenly aware of these issues. I have seen people with various levels and types of disability, and I have seen their children start down similar paths. I have seen people who have been deemed "unfit for work" participate in the shelter's community life in ways I would not have expected them to be able based on their categorized disability, and I have seen people who were on SSI or SSDI believe themselves to be handicapped as a result of their disability. All of this is to say that the politics of this is somewhat out of my current depth, though my experience leads me to wish we spent fewer tax dollars on "hand out" programs like SSI and SSDI and more tax dollars on "hand up" programs like the Rehabilitation Services Commission or the Bureau of Vocational Rehabilitation. The psychological benefits of equipping individuals to participate as much as possible in community are not valued in our society, to our detriment.

The McNary boys and Duchenne Muscular Distrophy

A friend posted this incredibly moving article to his Facebook page because he knows one of the authors. It tells the story of Jenn McNary and her two sons, Austin and Max, who both have Duchenne Muscular Distrophy (DMD). Typically, a person with DMD is not expected to live past the age of 20. Austin is 14 and confined to a wheelchair. Max is 11 and is able to run, skip, and jump...because he has been receiving an experimental drug for the last year and a half as part of a drug trial that his older brother did not qualify for. The article goes into detail about their mother's struggle both to care for the kids and to get access to the medication for her older son.

This story is framed in such a dramatic way--brother and brother--that it has me thinking about the other children and adults living with disabilities. DMD is known to be fatal, which puts a particular point on the story of Jenn McNary and her two boys, but there are so many people for whom their disability is not fatal. They live with their situation day in and day out, and often there are no cures. I don't mean to sound dramatic, but reading about how one boy is living a more-typical life while his brother falls further into disability is heartbreaking. I feel so much for their mother and step-father, and it makes me conscious that there will be parents of the children with disabilities in my classrooms. It's one thing to prepare myself for the challenges of enabling children with disabilities, but I need to also be aware of the struggle their parents and family members might be experiencing. The children might be handling their situation one way, and their family might be handling it very differently. As I strive to include parents in the education of their children, whether or not they are disabled, I can't lose sight of their individual experiences with caring for their children.

Disabilities and standardized tests

A friend posted this article from the Washington Post on his Facebook page. I've known that there have been issues with students with disabilities taking standardized tests, but in class we have also been learning that special considerations must be allowed for students that need them. Despite this, I was shocked to read how stringent Florida's law is regarding standardized tests, and dismayed to hear the plight of these parents and teachers to save their children from the suffering and indignity the tests cause them.

I have been against standardized tests since their implementation, and what started as a gut reaction is building momentum as I find anecdotal evidence such as this article as well as looking for peer-reviewed research on the matter. The sheer ignorance of the politics driving the problem is baffling...except when corporate profit is factored into the equation.

I recognize that this article represents a minority of cases in which appropriate accommodations are not made for students with significant disabilities, but it reminds me that more can and should be done to ensure that students are being adequately educated, not used as pawns for one agenda or another. I appreciate wanting to have a good sense of the overall student demographic of a region or district, but the cost to our educational system--and to the students themselves--is too high. A child with significant disabilities should be expected to learn appropriate life and independent living skills. There is no need or value in dragging them through the stress of standardized testing.

Personnel Plus and the Employment First movement

In another article from the Athens News' special section this week, I learned about a national movement called Employment First. The concept, supported by the US Dept of Labor, prioritizes giving people with disabilities jobs that incorporate full inclusion in the community and workplace.

This arrangement seems to have the dual benefit of being better for the individuals--as they get more time observing and interacting with typical peers and community members--and also apparently being considerably cheaper (1/3 the cost) than sheltered employment programs. We discussed in class some of the issues surrounding employment of people with disabilities, including low wages. This particular article did not get into the grittier aspects of these services, such as: could a person lose their Medicaid benefits or subsidized income if they make too much money at their job? Would their job be required to provide insurance for these employees as it would for typical employees?

One thing that seemed quite positive was the continued support the employees receive from Personnel Plus. These supports help maximize the benefits of working in the community and also help the employee with job retention by working on the interpersonal and professional skills necessary to maintain a job.