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.

Athens On Demand Transit (AODT)

In the Athens News special section this week, I found two articles dealing with transportation for folks with developmental disabilities in Athens County. The first article reported on a pilot program called Athens On Demand Transit (AODT) that is designed to help people with DD and the elderly to get to appointments and other events not related to services already supplied by the ACBDD.

I am impressed and encouraged that such services exist in Athens County. I am vaguely aware that there is a network of support for people with disabilities in Athens County, but--with the region being so poor--I am surprised to learn just how strong and supportive that network is. According to the article, three different agencies (ACBDD, DD Council, HAPCAP) partnered cooperatively to make this program a reality. That's incredible! I was also impressed that the program is available to seniors, who are often a forgotten group. The second, shorter article discussed briefly the existing transportation available in Athens County for people headed to existing ACBDD programming. Again, the resources (several buses, vans, and cars) dedicated to helping people with disabilities is impressive. I'm sure there are still issues related to using the services, but I find the fact that such a poor county has such thorough and thoughtful support to be encouraging.

Federal Probe of Group Homes

I stumbled upon this article today about a senator in Connecticut calling for a federal probe into the conditions of privately-run group homes. According to the article, there have been an alarming number of deaths in recent years in his state from abuse, neglect, or medical errors, and he wants to instigate a national investigation into the issue.

Having just talked in class recently about the condition of large institutions in the last century, I was not expecting to see an article like this pop up in my current news feed. The sense I had was that such widespread abuses were largely a thing of the past, though of course abuses still occur.

I cannot tell if this is evidence that privitization of services with public funds leads to valuing profits and "the bottom line" over quality of care, or if the good news is that the public funding is what seems to be prompting the investigation into abuses in the group homes. I can say that the debate over public or private funding of services for the disabled is disheartening. Without proper free support, how is a person with a disability supposed to engage in modern culture in such a way that allows them to not be poor? And if they are poor, how can they avoid abuse and neglect in the name of profit? We haven't been able to work out solutions for non-disabled people in poverty, so why should I expect that those in need of special services would get the care and recognition they deserve?

Down's Syndrome births drop despite ADA passage

This article on the Huffington Post website outlined some troubling information regarding the birth rate of children with Down's Syndrome and also presents an interesting perspective on the cultural dynamics that might be affecting it. The article notes that--though it seems counter-intuitive--the rate of children born with Down's Syndrome has dropped by 25% since the passage of the ADA by President Bush. One might assume that the protections afforded by the ADA would influence parents to bring babies with disabilities to term more often, but the data suggests this is not so. The authors then cite several news reports and media depictions, the likes of which probably create a cultural bias that continues to skew parents against carrying a fetus with Down's Syndrome to term.

As a new parent, I am particularly sensitive to this issue. It disappoints me to read that people are presumably understanding the "responsible" choice to be termination of pregnancy rather than bringing a child with a disability into the world. I can understand why they might choose this if they learned their unborn child had Down's; as soon as the public movement against using the word "retard" found success, the word "Down's" became the new substitute. I've heard it used by kids on the internet and kids in public to describe their friends and enemies. I fear we have a long way to go before our society is so enlightened that we stop taking advantage of the disadvantaged.

Honda: Powered Walking Assistance

I recently learned of two products developed by Honda that are currently in the prototype and testing phase, designed to help people with limited use of their legs to regain mobility. I have been wondering for years why we don't see more of these types of devices in actual use, and was excited to learn more.

The Stride Management Assist is a hip and thigh harness that offers motorized assistance to the user's legs, increasing their stride length and allowing them to walk longer distances. I could easily see this being used by the elderly and people with limited use of their leg muscles, perhaps the result of degenerative or congenital conditions. I have known people who have had hip replacements, for example, who had limited use of their new hip because they didn't have quite the full range of motion they had pre-surgery. This device would help them open their stride and potentially gain flexibility and range-of-motion faster.

The second product in development by Honda is the Bodyweight Support System, which adds motorized support primarily to the knees, thereby reducing the burden of the leg muscles to carry the body. While still in testing, I could see this being used by many of the same people as might use the first device. In watching the provided videos, I'm wondering what benefit these devices would have for people with arthritis or other joint and ligament disability.

This sort of technology feels overdue, but I am very encouraged to see it in development. As batteries become lighter and motors get smaller and stronger, I would hope assistive technologies such as these would rise to the challenge of being practical and beneficial for restoring the activity levels of people with any number of lower-body disabilities. Maintenance of activity levels is a primary predictor for long-term happiness and health, and none of us are getting any younger!

Frida Kahlo

I was flipping through a copy of a recent TIME Magazine when I came across a brief article about the art of Frida Kahlo being used as inspiration for a fashion line. The pictures they showed of the fashion line itself were rather uninspiring, but the short write-up on the painter caused me to do a little more research on the Mexican painter herself.

I was struck first with her giftedness as a child but second with the tragedy and pain that befell her in her childhood. That pain seems to have dominated her life--or at least her art. Having survived polio as a child, she was in a terrible bus accident at age 18 which permanently damaged her right leg, spinal column, and uterus, among other injuries. These injuries brought her recurring pain throughout her life and led to three failed pregnancies.

She started painting while she was in a full body cast recuperating from the accident, and she painted the subject with which she was the most familiar: herself. In looking at her accumulated works I see a great deal of majesty and pain, often intermingled. Looking at her art creates conflicted emotion for me about her disabilities: I simultaneously feel a measure of pity at the pain represented in the images and an understanding that the images likely would not have the gravity they do without the pain her disabilities caused. So much of art stems from the artist's physical or emotional pain, and it is a continual wonder that such beauty and inspiration--sometimes even in tragic images--can be the lasting expression of the pain of disability.

Downton Abbey: Sir Anthony Strallan

I've only recently been watching the BBC produced show Downton Abbey, which takes place in Britain immediately after the first World War. I was struck by the show's treatment of one character in particular, Sir Anthony Strallan. A middle-aged widower, Strallan sustained an injury during the war that left him without the use of his right arm. Before the war, he was seen as an eligible bachelor and one of the matronly characters was actively trying to set him up with her granddaughters. After the war, when he returned with a (presumably) paralyzed arm, the family's attitude toward Sir Strallan has changed dramatically. Not realizing that he is now disabled, the grandmother is embarrassed that she invited him to tea with the granddaughter that had previously been in a relationship with Strallan. Throughout the course of the next few episodes, Strallan becomes engaged to marry one of the granddaughters and the rest of her family adjusts to the relationship with various degrees of acceptance. The story culminates in Strallan abandoning his bride-to-be at the altar, overwhelmed with feelings of guilt that he is causing her to waste her life caring for an old man.

It seems outlandish that the family's attitude toward the man would have changed so dramatically as a direct result of his injury. It is made clear that Strallan is a qualified Lord and therefore socially would make an acceptable husband in the dual-class imperialist system. In the story, Strallan was even involved in high-level diplomatic negotiations before the war, though this prestige has no bearing to the family when compared to his disability. Socially, his disability has instantly made him an unacceptable life partner.

I would like to think that this sort of thing did not happen in modern society, but I am reminded of the injured military veterans who return home only to be eventually rejected by their partners or families. In truth, with the advent of high explosives and the nature of modern warfare, disabilities caused by war are likely far more severe than they were during the first World War. Times are improved inasmuch as there is no official social prohibition against marrying a person with a disability, but the unmentioned stigma certainly still exists.

Prominent Paralympian Charged with Murder

I was reading this news article today about a South African athlete who had both of his legs amputated below the knee as a child. He was charged with murder today in the shooting death of his girlfriend. Though I'm not familiar with him (I don't keep up with sports much in general), Oscar Pistorius was apparently something of a famous name in the Paralympics and the Olympics as the first person with prostheses to be allowed to compete in the Olympics. In reading this article, it strikes me that he is treated the same as any other athlete who gets caught in a crime-related news segment. There is very little discussion of his disability but a much stronger focus on his alleged personality quirks.

I clicked through a few more stories about Pistorius and found this one, in which he reports some of the pranks and bullying he experienced while at boarding school. I'm sure that his lack of legs caused him to stand out from his peers, thus making him a target. Catching his bed on fire seems a particularly cruel prank, and so does hiding his "day legs" on a regular basis. I get the sense that pranks and bullying were a regular part of boarding school, but I also get the sense that he received more than his fair share of abuse. I wonder more than a little if that adolescent abuse contributed to his reported personality difficulties. Different people respond different ways to such cruelty, but we are all affected.

"Uncle" Jack Dorso; Arrested Development

The other night my wife was watching one of her favorite television shows--Arrested Development--for the millionth time. I was in the room, but working on other things and not directly watching the show. It was an episode called "Ready, Aim, Marry Me!", and guest-stars Martin Short as a character named "Uncle" Jack Dorso. I've seen this episode a number of times, and I would say that I like both the show and the few episodes with Short as Uncle Jack. In general, the show is full of exaggerated and self-centered characters, and there are very few characters that the audience is meant to connect with or relate to. Uncle Jack falls in line with this, with the addition that he is also disabled. According to the story, he lost the use of his legs on his 70th birthday while performing a feat of strength by lifting weights. He now has hired a large, dimwitted, muscular, and half-deaf man called Dragon to carry him around because he declares he "won't go wheelchair!"

Even having seen all this before, I still found myself responding differently to the show on this occasion. I suppose I can only attribute it to class. This time, I was quite conscious of how the show treated Uncle Jack and Dragon. Sure, they were lampooned the same way every character on the show is, but there was a significant difference: for these two characters, their disabilities played into the humor and built slapstick into the show. At one point Uncle Jack yells at the near-deaf Dragon to take him "To the nuts!" Dragon swoops Uncle Jack into the crotch of another character on the show before Uncle Jack corrects him loudly, "To the bridge mix! You fool!" At which point Dragon swoops Uncle Jack's head into the bowl of nuts sitting on the coffee table, where he eats a mouthful like a dog might even though he has use of his arms and hands. 

As irreverent as the rest of the show is, it seemed like there was an additional focus on making the disabilities seem absurd. Uncle Jack's choice to not use a wheelchair makes him feel less handicapped but arguably exaggerates his disability. It also dismisses the upper body strength he is otherwise so proud of. Dragon's near-deafness is treated as dimwittedness. 

I am left not quite knowing what to think of these outlandish characters because they are floating in such a sea of other outlandish characters and the nonsensical situations they get into as a result of their selfish choices. I can't tell if it's respectful that there is no respect given to their disabilities (meaning: there is no special treatment), or whether the show treats the disabilities of the characters with less respect than usual. That said, I know I won't be able to watch the Uncle Jack/Dragon episodes the same way again.