We Have Lift-Off!

We finally got lucky. The fourth pair of new shoes that I bought won the approval of all the physiotherapists at C.'s school.

Next came the hunt for a shoemaker able to do more than just nail patches on soles. (We weren't aware that skilled shoemakers are a disappearing breed.).

After scouring the city, we "nailed" one who claimed to be up to the challenge: adding a one centimeter lift to the right shoe-sole. C.'s physiotherapist and brace-maker suggested this in order to correct the unequal length of her legs.

Then more luck. They both OK'ed the resultant lift.

After observing C. walking with her new equipment (MEDEK-style), they declared her stepping as good as before and her posture even straighter.

Naturally this "report card" thrilled me. But I'm not satisfied yet:  I'm hoping for that elusive dream: Significant Improvement. 

I can't remember the last time we saw any in C.

In the meantime, here she is modeling her new walking aids.

When doctors were abusers

Movie poster for "Willowbrook"

From the depths of Willowbrook State School, the "mother" of de-institutionalization, comes a new horror story.

"Willowbrook", a fictionalized film based on true events, describes abuse that doctors inflicted on mentally disabled residents of that institution. It was screened last week in New York at the ReelAbilities Film Festival. 

The trailer was horrific enough for me - I doubt I could sit through the entire 16-minute film. 

I'm sure those of you who, like me, missed it, will find this review [here] by Dr. Barron H. Lerner and the comments it spawned enlightening. It seems the Willowbrook medical researchers hoped their Mengelian abuse - the injection of active hepatitis virus into healthy children with mental disabilities - would provide deeper knowledge of the illness and  a vaccine.
 

Lerner reminds us of some other well-known Willowbrook horrors:  

The situation was abominable, with children lining the corridors, many unclothed and lying in their own excrement. It is little wonder that then-Senator Robert F. Kennedy called Willowbrook a “snake pit” after a 1965 tour. An exposé of the brutal conditions by a young television reporter named Geraldo Rivera in 1972 led to government inquiries and the eventual closing of the institution — but not for another 15 years.

I was surprised that Lerner assessed the "experiment" primarily from a medical ethics perspective. For instance, he wrote 

Although Dr. Krugman and others defended what had occurred, most ethicists see Willowbrook as an example of medicine run amok, in which overzealous researchers did harm to an exceptionally vulnerable population.

I'd say, though, that this "cautionary tale", as the review aptly dubbed it, alerts us most to the general plight of citizens with disabilities i.e. our children.

The invisibility of the disabled

The younger of the two anonymous woman in the obituary

Recently, a local newspaper journalist here replaced one of his two weekly obituaries - normally devoted to newly deceased and renowned citizens - with the obituary of an unknown, wheelchair-bound woman. At 62 years of age, she had perished in a house fire along with her mother. 

Mention of the tragedy on an evening news program inspired the journalist to investigate and publicize the woman's life. The result was a moving, but also distressing, portrait of a capable, intelligent, accomplished professional who had been totally ignored by her neighbors. 

Interviewed on TV, a neighbor said of the pair: "We didn't have much contact with them. They didn't want to have contact with anybody. The daughter was disabled and handicapped. The mother was elderly. A nice woman."
 
Assisted by two researchers, the journalist lifted the two women from their anonymity. 

It emerged that the younger woman had worked in special-education and had written several books on the subject. Regarding her supposed yen for isolation, she actually had a close friendship with a young man in his twenties who devoted much time to assisting her with her daily needs. Demonstrating empathy unusual at his stage in life, the young man would come every evening to help her get into bed. 

He also took her on brief outings occasionally and in October, 2012, on a cruise to several European port cities. She in turn was "like a mother" to him, he said, adding: "She was a happy person; always smiling... with a lot of strength and decisiveness."  

So much for their neighbor's theory.

To be fair though, it's a trap anyone can fall into. Sometimes I need to be mindful that my own presumptions don't lead me to ignore the disabled. While I was at the dentist's clinic several weeks ago, one of  the cognitively-disabled patients in the waiting room began to speak. Initially I dismissed the young woman's garbled words as white noise.  But eventually I realized she was addressing me, and asked her "What?" She repeated the statement and, focusing now, I easily deciphered it. "How old is she?", she asked me, clearly referring to my daughter C. 

How fortunate that I caught myself in time to respond to her perfectly appropriate question.

What's in a word?

Illustration from New York Times

March 6 was the officially designated "Day of Awareness". Its purpose was to discourage - probably even eradicate - use of the words "retarded" and "retard".  

Once purely medical terms they long ago morphed into scathing insults. That holds just as true in our local language. I wonder whether the phenomenon is worldwide. 
 
While I usually opt for the politically correct synonyms such as "cognitively impaired" or "intellectually disabled", I must confess that on occasion I do utter the "R" word. When I'd like to succinctly convey the gravity of C.'s condition I might say "She is severely and globally retarded". It tends to sock my listener between the eyes. 
 
John Franklin Stephens, who has Down Syndrome himself, said "No one overcomes more than we do and still loves life so much". You can read some more of his articulate comments about cognitive impairment below.

A Word Gone Wrong
By LAWRENCE DOWNES | New York Times, Saturday March 2, 2013

This Wednesday is the fifth annual “day of awareness” in a national campaign to stop the use of the word “retarded” and its variants. As a medical label for people with intellectual and developmental disabilities, the R-word used to be neutral, clinical, incapable of giving offense. But words are mere vessels for meaning, and this one has long since been put to other uses.

“Retarded” and “retard” today are variations on a slur. Young people especially like it: as a weapon of derision, it does the job. It’s sharp, with an assaultive potency that words like “moron” and “idiot” lost sometime in the days of black-and-white TV.

The campaign against it, called “Spread the Word to End the Word,” is heartfelt and earnest in a way that makes it vulnerable to ridicule. I know people who care about language who do not see themselves as heartless and who do not see “retardation” as anything to get worked up about. To them, banishing the R-word for another clinical-sounding term is like linguistic Febreze: masking unpleasantries with cloying euphemisms.

In this, as in other cases of discrimination, it’s probably best to let those affected speak for themselves.

Here is John Franklin Stephens, a man from Virginia with Down syndrome who serves as a “global messenger” for the Special Olympics. He has written op-ed articles giving lucid voice to thoughts you may never have heard before:

“The hardest thing about having an intellectual disability is the loneliness,” he once wrote in The Denver Post. “We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, ‘unh huh,’ and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.”

“So, what’s wrong with ‘retard’?,” he asked. “I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the ‘in’ group. We are someone that is not your kind.”

Last year, after the right-wing personality Ann Coulter sent a Twitter message about Mitt Romney and President Obama — “I highly approve of Romney’s decision to be kind and gentle to the retard” — Mr. Stephens wrote her a letter. “No one overcomes more than we do and still loves life so much,” he said, with such persuasive graciousness as to put other writers to shame.

As Mr. Stephens makes clear, people can be thoughtless and cruel, or well-meaning, and never know the damage their words can do. The campaign is about inclusion. History is full of stories of people from outside who fought their way in. To those with intellectual disabilities, it sometimes seems the battle is just at the beginning, when little victories — like an end to insults — are hugely important.

An inspirational life

Image above comes from the New York Times profile of Josh Miele

 

I found yet another inspirational story about somebody with a disability.

At the age of 4, Josh Miele was blinded by an acid attack. As if that weren't enough trauma, his parents divorced shortly afterwards. To say he overcame his obstacles is beyond an understatement. 

Today he is the married father of two and holds a degree in physics along with a Ph.D. in psychoacoustics from the University of California at Berkeley. He has worked  for the technology company Berkeley Systems on software to help blind people navigate graphics-based computer programs and for NASA on software for the Mars Observer. He is the president of the board of directors of the San Francisco LightHouse for the Blind. He plays bass in a band. And he works as an associate scientist at the Smith-Kettlewell Eye Research Institute, a nonprofit research center. He has also helped develop tactile-Braille maps of every station of the Bay Area Rapid Transit system. 

You can read more about this remarkable individual in this New York Times article.

Heart-sinking

Disappointing news about C.'s swimming prowess, about which I've boasted in the past. 

I chanced to ask the hydro-therapist how she was progressing - and did my heart sink (no pun intended). I learned that she doesn't float independently on her back anymore unless rings are slipped onto her legs to annoy her. Without them she just lowers her legs until she's standing in the water. 

Now I'm considering bringing her to the school pool to practice in the afternoon. The hydro-therapist thought that might help. In any case it would give C. more time enjoying what seems to be her favorite activity, judging by the way her body and face totally relax the second she hits the water.

But I must confess: I've been talking for years about bringing her to the pool myself and haven't yet done it. It's just too daunting. 

Maybe the prospect of posting about it here will provide the push I need.

Footnotes

Here are C.'s new brace and the 4th pair of new shoes I have bought for her in the last 2 weeks.
 
I'll get her physiotherapist's assessment of these shoes tomorrow.  I'm afraid that they will share the fate of the previous 3 pairs I've bought: getting nixed by her physiotherapist and being returned to the store. 

Finding the right shoes is particularly challenging because C. wears a brace only on one foot. So the shoes must be big enough to fit over the brace, but not too big for the unbraced foot. Also, because C.'s legs are different lengths, the shoe must be able to accommodate a lift under one of the soles.
 
To complicate matters, each physiotherapist has different advice for me. One says only laced shoes will do. Another says velcro straps are O.K. One says high shoes are best, another says low ones are fine. One says buy two pairs of identical shoes in different sizes so the large one can fit over the braced foot and the small one over the unbraced. 

Once this saga ends you won't find me in a shoe store again for a good few years.