The Mutilation Continues

Back in 2007, I wrote about Ashley a young girl from Seattle who had decisions made for her that forever altered the course of her life. The pictures to the right, courtesy of The Guardian, show Ashley in 2007 and again in 2011.

A Tale of Two Ashleys

A Tale of Two Ashleys, Continued

A Year After the Mutilation

As I wrote back then, "She had no say in whether or not she wanted her uterus removed, her breast buds and milk glands removed and massive doses of hormones injected into her. She had no say as to whether she wanted to remain a child for the rest of her life or wanted to grow and mature like every other young girl. As her siblings grow, she will forever remain a young child. She will watch her parents grow old and will perhaps wonder why everyone around her changes but she does not. All of these decisions were made for her by her parents, parents who decided these things were in her best interest."

The debates were many and heated, and they live on today. They live on because parents are quietly also doing the same thing to their children. Both boys and girls. The parents hope no one finds out, but The Guardian in the UK did, and their articles are listed below. I urge you all to read them and express your opinions on this matter.

Rise of The Ashley Treatment Continues

Ashley Treatment on the Rise Amid Concerns from Disability Rights Groups

A Virtue

Pretty much everything we do as a family takes a long time.

When we decide to go out, we have to start getting ready at least 30 minutes before we need to leave. Backpacks need to be packed - medicine needs to be packaged - trips to the bathroom need to be made - extra food needs to be brought - and 'diversions' need to be remembered. I feel like we are being spontaneous if we get out of the house in under 20 minutes.

Getting two children in wheelchairs into our vehicle takes a while also. Then making sure everyone is buckled in and nothing has been forgotten, and we are usually pulling out of the driveway in another 10 minutes.

When we arrive at our destination, we reverse the process - and it takes a while. Chairs unloaded - children loaded - backpacks and other paraphenalia accounted for - there goes another 10 minutes.

But it's when we are leaving a public place - a store or restaurant for example - when our slowness seems to really irritate people. Whether it's the person waiting for our parking spot, or the people whose paths we are blocking with the wheelchair ramp - often they really get annoyed with us.

I've also noticed that annoyance on school mornings when the bus arrives. As with our vehicle, lowering the wheelchair ramp, backing Ronnie's wheelchair onto it, making sure the safety strap is in place, then raising the ramp into the bus takes a few minutes. After Ronnie is on the bus, then it is Ashley's turn to walk to the front of the bus and board via the steps. She can't board the bus until Ronnie is on because the bus aide must be there to assist her up.

There are usually 3-4 cars stacked up in either direction waiting for the bus to turn off the flashing red lights, and I can read the impatience on the driver's faces. Sometimes a driver will get so impatient that they will turn their car around and take another route.

Why the annoyance? Why the impatience? I really don't try to go slowly - it's just the way things are for my family. And really, is an extra five minutes such a burden to others?

My Prayer for the 5th Day After the Snow Storm

Dear God,

I have truly enjoyed the gift of snow You sent last weekend. Thirteen inches! Wow! And to think that we had fourteen inches just 6 weeks ago.

The kids and I really enjoyed Your gift – the beautiful fat flakes of snow falling from the sky – the way our yard and driveway resembled a fluffy down blanket – and the way the sunlight made it glisten like diamonds. When You send a gift, it truly is a magnificent gift!

You probably knew that we would enjoy making hot cocoa while watching movies and staying in our pajamas all day long. However, by the third day, our pajamas were getting a little smelly. And that hot cocoa – the chocolate scent still wafts from where it was spilled on my carpet.

At least the kids had plenty of time to play their video games – killing and maiming all the bad guys and zombies on their virtual planets. But we also had time to play all those board games that seldom come out of our closet – Clue, Monopoly, Fact or Crap, Things, etc. I never realized what little cheaters my children could be when bored though.

And all that food I stocked up on just before Your gift arrived – well, it’s all gone and the kids have resorted to eating their cereal with KoolAid and their toast with spaghetti sauce. Did You know that brownies made with bits of Captain Crunch in them are not all bad?

So, thank you again, God, but please could I ask just one more favor? My city could use some more snow plows and some more road salt. If they had that, perhaps the school buses could get into our neighborhoods and take all our little darlings back to school. And maybe, just maybe, I could have a little bit of hair left after pulling out most of it this past week.

You know all that “Give us this day, our daily bread” stuff? Forget the bread today, dear God, and send the school buses.

Thank you, Amen, Please……

Why So Many Changes?

Ashley has been receiving ESY services for six weeks so far this summer. During those six weeks, she has had three different bus drivers, three different bus aides, three different busses and three different bus schedules. Her ESY hours have not changed – for the entire six weeks she has been receiving services from 8am until noon each day.

I just don’t get it. I will acknowledge that setting up bus schedules during the regular school year is a daunting task. A whole bunch of students have to be delivered to a whole bunch of schools. But during the summer, the numbers are drastically reduced. Why three major changes in six weeks??

As all parents of children with disabilities, especially children with significant disabilities, know, changes are difficult. For a child like Ashley who is deafblind, all the differences are magnified. Each bus, driver, and aide smell and feel different. She can tell when the time the bus arrives is different. She gets anxious when the schedule changes, and changes significantly. For the last two weeks, she was picked up at 7:10am each morning. Starting this week, she is picked up at 7:40am. She is going to the same school and school starts at the same time. So what is up with the significant schedule change?

And I’m tired of having to go through my spiel each time there is a change – “Ashley is deaf. She can’t hear you talking to her. She is blind. She cannot see the steps to disembark from the bus. She has seizures. Here is what they look like. Here is what you need to do and not do when she has one. Yes, she prefers to sit in the first seat behind the driver. No, you may not take away her ball of wires and pipecleaners. Etc. Etc. Etc.”

There are four weeks of ESY services yet to be delivered. Does anyone want to take bets on how many more bus changes and schedule changes Ashley will be expected to handle?

Be a Good Boy and Bring Mrs. Smith a Fresh One

As the parent of three children with significant disabilities, I have experienced those moments when adult beverages call to me. I imagine that for teachers of children with significant disabilities, the challenges faced each school day, both with educating the children and dealing with often difficult administrative rules, can also present the siren call of alcohol's numbing effects.

But, is it necessary to heed that call during the work day when those children's eduation and lives are in that teacher's hands. I think not....

Teacher Drunk On School Grounds

News That Shouldn't Be

Some days when I am researching news stories about people with disabilities, I have a really tough time finding anything. Then there are days like today when many stories just seem to jump off the page, all vying for the ‘Un-freaking-believable” award. Here are today’s stories, and I stopped looking for more after just 5 minutes…

Seems a mother and her son with autism were kicked off a plane in North Carolina. The little boy, just two and a half years old, didn’t like the flight attendant continually making his seatbelt tighter and then yelling at him. I’m with you, little Jarrett, I would have, as the flight attendant so eloquently put it, pitched a raging fit also.

And, plane horror stories are not confined just to the United States. A young mother traveling alone with her two seven year old physically disabled twins was abandoned on a plane in Mallorca. The mom was being considerate and decided to let all the other passengers disembark before trying to get her sons off the plane. The flight crew said they would be back to help her carry the boys. Seems they forgot….

Next I ran across a story in the UK Guardian about children with deafblindness not receiving the services to which they are entitled. Even though this story focused on the UK, the words ‘United States’ could easily and correctly be substituted.

And, I don’t mean to be picking on the UK today, but I don’t make these stories up. A young girl whose family is from Gambia was brought to the UK to have cochlear implants. Soon after the surgery, the UK government told the girl and her family that they could not stay in the UK, and would have to return to Gambia. The girl’s family said, “Wait, you can’t just implant these things and send us on our merry way. They require regular attention to help a person realize their benefits.” That is, of course, very true as any family that has gone through cochlear implant placement for their child well knows. This reminds me of my blog post from last week titled,Pimp My Ride.

And finally, a story that is today making headlines across the US, the Supreme Court has decided that child rapists cannot be executed if convicted of that crime. While I don’t want to get into a debate on whether the death penalty is right or wrong, I can imagine that the eight year old girl that was raped in Louisiana by her stepfather (the man whose case was appealed to the Supreme Court) and who was described by the prosecution as suffering internal injuries and bleeding, requiring extensive surgery, as well as suffering severe emotional trauma, will at some time in her life wish her stepfather had killed her.

So there it is - all the news that should never have happened...

The Tribe Has Spoken

Alex Barton is 5 years old. Last week he was voted out of his kindergarten class because his fellow students felt he was "disgusting" and "annoying". The classroom teacher suggested the vote - the school prinicpal supported the teacher.

Sound unbelievable? Unfortunately, you and I know it is quite believable. Here is a link to a newspaper story:

St. Lucie teacher has students vote on whether 5-year-old can stay in class and make sure you read some of the comments left on the newspaper article ... talk about disgusting and annoying ...

And many, many disability bloggers are writing about this issue. The best, in my opinion, and one which has links to many other blogs is here:

Odd One Out

You will find suggestions for expressing your feelings about all this on the Odd One Out blog. I strongly suggest you do express yourself. Tomorrow it could be your child or mine...

A Rich Man?

Adam Jasinski is the winner of Big Brother 9. Adam is also the person who, early on in the show referred to the children with whom he worked as ‘retards’. His exact statement on the show was "I want to do a hair salon for kids with special needs so retards can get it together and get their hair done." And he is now $500,000 richer.

Mr. Jasinski was employed by the United Autism Foundation. I’ve had very little luck finding out anything about the United Autism Foundation. The organization has a home page, but only that one page, and at the top is the message “Website Under Construction”. Two other statements are on that web page. The first states ,”AUTISM is one of the fastest growing disorders in the country, UNIAF is trying to create awareness and help all those who are diagnosed with AUTISM.” And the second states, “UNIAF is trying to build the first Children’s Dental Center for special needs patients in the country. UNIAF is committed to help millions of special needs patients nationwide.”

I also found another statement (listed on idealist.org) about their mission:

The United Autism Foundation is a 501(c)(3) corporation, which was only established to serve and improve our community in order to help children and change lives.

It is the strategy of the United Autism Foundation to focus primarily on raising funds, which is a necessity to improve our society, have an immediate impact, and make a serious difference in our community today. We serve the community with dignity and ensure the most appropriate use of all donated funds: improving today for the future of tomorrow.

After analyzing the needs of our community, UNIAF is focusing on improvements of education, medical, and economic conditions of families and their children with special needs, specifically children with autism.

At UNIAF, we are not only passionate about what we do, furthermore, it is our daily motivation to strive after our goals and realize our vision, just thinking about the most exciting reward, a smiling child and happy family. It is all about securing the future of our society.

The United Autism Foundation is working with the local and national media, to increase awareness and encourage more aggressive funding to improve our community today. It is our commitment to serve the community and secure the future of our children.

So, given that the organization is focused primarily on raising funds, they should be pretty happy that when Adam Jasinski was pronounced the Big Brother winner, he immediately yelled out that he was giving $100,000 to UNIAF. Of course, he probably didn’t know at that moment that he was no longer employed by UNIAF. After his ‘retard’ comments in February, UNIAF announced on their web page that Mr. Jasinski was no longer employed by their company.

Will Adam Jaskinski stay true to his stated commitment of giving $100,000 to UNIAF? Will UNIAF hire Adam back just to get the donation? Will Adam continue to refer to people with developmental disabilities as “retards”? I think UNIAF has certainly met their goal of increasing awareness within the media regardless of the answers to those questions.

Say WHAT?????

Have you ever been sitting in an IEP meeting or some other school-related meeting when someone from the school staff says something so utterly ridiculous that you are left speechless?

I read an article in the Virginian Pilot newspaper yesterday on the subject of advocates assisting parents in the special education process. One of the advocates featured in the story, Cheryl Poe, began her journey to advocacy because of one of those ridiculous comments made to her about her son. The quote from the newspaper was "For Poe, her activism was spurred by her own experience. About six years ago, while trying to get diagnosis and treatment for her son’s learning disability, she said a school speech pathologist told her she was the problem, that she must have been speaking black English to him at home." Say WHAT????

Although I've heard many ridiculous comments at the IEP meetings for my children, the worst was when, following a triennial review, Ashley's teacher announced to the team that Ashley was a "visual and auditory learner." Say WHAT?? ASHLEY IS DEAFBLIND!!!

So, what inane comments have you heard?

Lunacy?

Recently an old hospital, Weston State Hospital in West Virginia, was sold at auction to new owners who have named it the Trans-Allegheny Lunatic Asylum. Weston State was a mental institution, and the new owners have events planned for after they refurbish such as “Psycho Path” dirt bike races, "Hospital of Horrors" haunting tours in October, and a "Nightmare Before Christmas" tour on Dec. 23.

Does this bother others as much as it bothers me?

CBS News Story about Weston Hospital

A Year after the Mutilation

One year later. 4’5” tall. 63 pounds. Growth has stopped. "Ashley did not grow in height or weight in the last year, she will always be flat-chested, and she will never suffer any menstrual pain, cramps or bleeding," say her parents. That’s because she had a hysterectomy, her breast buds removed, and will take drugs for the rest of her life to keep her from growing. Her growth plates are permanently closed, and all this treatment has taken about a foot off her anticipated height. Ashley X. is 10 years old.

According to her parents, Ashley’s current state is a definition of success. Success for whom I am compelled to ask.

According to an interview Ashley’s parents did for CNN (via email only to protect their identities), “Ashley is now and will always be dependent on us in every aspect of her life: On an hourly basis we give her a position change and prop her back on her pillow; we make sure she is well covered and pull her shirt down to cover her tummy; we wipe her drool, etc. Also there are diaper changes, tube feedings, dressing, bathing, teeth cleaning, stretching, entertainment, etc.” Again I am compelled to ask, “So…? I believe all those things are covered in a parent's job description.”

The CNN interview reports when Ashley was 6, her parents approached Children's Hospital and Regional Medical Center in Seattle, Washington, for the operations. They believed this would make it easier to cuddle and carry a child who can do little more than lie propped on a pillow. Yet another compelling questions pops into my mind – so this surgery was done at least in part to make life easier for the parents. Eh?

Here are a few more facts surrounding this so-called treatment:

• It’s against the law


• The endocrinologist who participated in the treatment has committed suicide. The parents say it’s because he was so committed to helping other families the way he “helped” theirs, but he was thwarted by the law and opponents to the treatment.


• Ashley’s parents remain convinced that what they did was the most loving choice they could have made for their daughter.


• Ethicists believe that the "Ashley treatment" is a violation of not only human dignity, but also of a physician's oath to do no harm.


• Ashley’s parents want to help parents of other “pillow angels” understand their choices for their children

How do I feel? Well, here are links to previous blogs I have written about Ashley X. My feelings have not changed. I am outraged and appalled by what these parents did.

A Tale of Two Ashleys
A Tale of Two Ashley's continued

Here also is a link to the CNN story and to the interview with the parents.

And a link to the parents' website...

The Injuries We Do

"The injuries we do and those we suffer are seldom weighed in the same scales."
Aesop

TV, radio, and print media have been full of stories about the worsening economic crisis. Most of the stories focus on the housing market, and how high the number of foreclosures are. I believe there are many other stories in the U.S. that reflect the effects of our poor economy, but those stories don’t often get coverage.

I heard on a local radio station this morning that huge numbers of children are entering the foster care system in the southwestern part of my state. Why? Because their parents are manufacturing and selling methamphetamine to try to make their house payments. Always an area of lower economic means and high meth use, the fact that things are getting much, much worse is very telling for this part of the state. The economic crisis can now be held responsible for increased meth production and addiction and for the dissolution of families, as well as for loss of homes.

Another sign, at least to me, as to how bad things are getting, is the increased numbers of people I see shopping at Goodwill and other second-hand stores. My oldest son and I make frequent trips to our local Goodwill store in search of music for his record player. Being the free spirit that he is, Chip would prefer to listen to old 33 1/3 vinyl records than to compact disks. He claims the music is ‘richer’ on the vinyl. Until the last 6 months, whenever we were in the Goodwill store, which was usually on a Saturday, not many other people were shopping there. That is no longer the case. When we visited last week and yesterday, the parking lot was full, the store was crowded, and the check-out lines were as long as any line in a WalMart. Entire families were shopping together, gathering clothes, toys and housewares. Being forced to shop at Goodwill rather than a deep discount store such as Walmart is also very telling of the current state of the US economy.

The final, and most heartbreaking, sign of how bad things have gotten was revealed in the faces of the homeless family I passed yesterday afternoon. The family was composed of a man and a woman, and three children, the oldest of which was in a wheelchair. They were all carrying garbage bags full of what appeared to be their meager belongings, and bags were also tied onto the wheelchair handles. I see lots of homeless people in our downtown area, most of them, however, are men or women alone, wandering the downtown streets of the city in which I live. This was an entire family, and they were walking the sidewalks of the suburbs, about 15 miles from downtown. Their utter despair was as evident in their slow, burden-heavy pace as it was on their downcast faces.

The next statements I write will be political in nature. If you do not want to hear about my political views, I suggest you stop reading now.

Our economy has been plummeting the entire time that the Republicans have been in the driving seat of this country. Young men have died in record numbers in Iraq – families have lost their life savings and the security they had planned for their retirement years. Legions of families with young children are suffering and the outlook continues to worsen. Might it be time for a different driver?

Latimer on Day Parole

Last December, I wrote about Tracy Latimer, a 12 year old girl with cerebral palsy. Tracy's father, Robert Latimer was convicted in her death. Mr. Latimer appealed a recent decision by the parole board allowing him no parole. That appeal has resulted in Mr. Latimer being allowed day parole. He has served 7 years - 7 years for murdering his daughter. Here is a link to the story about his parole appeal and the decision:

Latimer Parole Decision

And, oh yea, as part of the parole decision, he cannot have responsiblity for anyone who is severely disabled. I feel much better about all this now (she said, sarcastically).

Dichotomic Press

I discovered two news stories this morning that caught my eye, but each one for very different reasons.

The first is a story about the two women who were used as pawns by the Iraqis to bomb a pet market on February 1st. I blogged about the event the day that it happened. Now US officials are making sure that we know the women did not have Down Syndrome as originally reported, but rather were suffering from mental illness. Excuse me, but what the hell difference does it make what their disabling conditions were? Does it make the act any less reprehensible that women with mental illness were used and not women with Down Syndrome? Why did the US and certain Iraqis feel it important to point out this distinction to us? I don’t understand.



Fortunately, the other story I read brightened my day and made me say “Wow”! According to the British TimesOnline, a color-blind artist who could only recognize black and white shades has learned how to paint with a full palette by “hearing” the hues he cannot see. Neil Harbisson, a Dartington College student is completely color-blind and has been fitted with a camera attached to a laptop, which converts color to sound. Absolutely amazing! I am not color blind nor am I an artist, but the geek in me covets this technology in an unhealthy way!

Deputies Dump Paralyzed Man From Wheelchair

I first saw the following information posted by Penny Richards at the Disability Studies, Temple University blog. It was also featured on the Today Show this morning.

Brian Sterner, a quad, was stopped on a traffic violation on January 29th and taken to the station for booking. Deputy Charlotte Marshall Jones didn't believe he was really paralyzed, so she dumped his wheelchair forwards, and he (surprise!) fell to the ground. The incident was caught on the office surveillance camera (video below, but be warned--it's distressing to see), and she has been suspended without pay. Brian Sterner, it turns out, is the director of the Florida Spinal Cord Injury Resource Center, based in Tampa. He plays wheelchair rugby with the Tampa Generals, and he's working on a PhD.



Here's the news story as reported by the Associated Press

It's Murder - Not Suicide

al-Qaida has a new technique - using women with disabilities as remote-controlled suicide bombers. I can't find any adequate words to describe the horror I am feeling...

Associated Press Story

Request Denied

Last October, I wrote about a mother who wanted to have a hysterectomy performed on her 15 year old daughter who has cerebral palsy. Katie Thorpe's mother said "She's not going to get married and she's not going to have children...Katie is not going to become a normal adult." Mrs. Thorpe also said, "All we are trying to do is keep and improve Katie's quality of life. By stopping menstruation it's allowing Katie to enjoy life to the full without the problems of menstruation...the mood swings, the tears, the stomach cramps, the pain, the discomfort, the embarrassment." Fortunately, doctors sought legal counsel before doing the surgery, and the verdict is now in - the request for surgery has been denied. Maybe that's why Katie seems so happy in the photo above.

Updates to Katie's story are reported here, here, and here.

Wrong As Wrong Can Be

I have sometimes wondered why parents continue to place their children with disabilities in facilities. I’ll use the word ‘facilities’ because it’s slightly less offensive to me than institution. I believed with the many horrors of institutionlization being revealed that no parent would choose such a placement for their child. But, I was being naïve and had incorrectly assumed that parents had made a conscious choice for a facility placement. What I now know is that sometimes parents are forced into such a decision. I have recently been informed of several examples, and one of those is listed below.

One of my friends is a single mom of a young daughter who is medically fragile. The daughter didn’t start life quite as fragile as she is now, but her medical conditions have deteriorated, and she now needs full-time nursing care. The Mom was trained by hospital personnel to deal with her daughter’s medical issues and equipment. And, the Virginia Medicaid Waiver program, specifically the Technology Waiver, is supposed to provide nursing care for the child when Mom is at work and when the child attends school. Without either the nurse or Mom, the child cannot attend school. Sounds pretty straightforward, doesn’t it? The Mom, with the assistance of the agency that administers the Technology Waiver, arranges for a nurse and a backup nurse, and the child’s life moves forward. The problem is finding a nurse and a backup.

The Virginia Medicaid Waiver program has set rates that it will pay a nurse. That rate is significantly lower than the hourly rate a nurse can get in private duty nursing. It soon becomes obvious that the pool of nurses willing to work for the reduced rate becomes quite small. And, in my more cynical moments, it could also mean that the quality of Medicaid nursing services are less than those of a private duty nurse. None of that matters however. The Mom is locked in to using a Medicaid nurse. Even if she could find someone else, Medicaid would not pay.

Those are all very real problems, but the most significant problem is that nurses get sick themselves. This child’s nurse is currently sick. There is no backup nurse because the pool is so small. The only solution is for Mom to stay home from work and accompany her daughter to school. Mom doesn’t get paid when she doesn’t go to work. It doesn’t take too many of these nurse absences to have a profound financial affect on Mom – a Mom already stretched to her financial limits because of the care her daughter needs. This child’s nurse has been out four days in the last week – a mortgage payment, as Mom describes the impact. Mom doesn’t know when the nurse will be back, and when this situation will be repeated. Her daughter has only been home from the hospital for three months, and already nursing services are crippling the family financially.

Mom has only two options – potentially lose her home and her security because of the financial impact, or place her daughter in a facility which provides round-the-clock nursing care. The current state of our Medicaid system has left this mom with two equally reprehensible choices. This is why children and other family members are still being placed in facilities in this state and around the country. The move to community-based supports is failing families like this, and will continue unless changes are made.

Unfortunately, change will not come quick enough for this particular family. Mom has said she will not, under any circumstances, place her daughter in a facility. I support her in that and will do everything in my power to keep that from happening also. The warning which should be very clear in this post is that such a situation is often only a few steps away for any family with a family member who has a disability. Our current Medicaid system is making a travesty of the move to community supports.

When that move to community if found to be failing, will someone – anyone – look to Medicaid for answers? They will if you and I let our voices and our stories be heard.

R.I.P. Brent Martin

Brent Martin was 23 years old when his body was found next to a parked car. Mr. Martin had been beaten to death by three men – one 21 years old, one 17 years old, and one 16 years old. On the surface this seems like just another story of violence reported by a newspaper in any large city. But there is a difference in this story.

Brent was a person with an intellectual disability. He was out for a walk in the community. He was spotted by the three young men, and the 17 year old bet the 16 year old money that he couldn't take Brent down with a single punch. Both boys were trained as boxers, and their victim was repeatedly punched, kicked, stomped on and head butted. The 21 year old and the 16 year old have already admitted to Brent’s murder, and the trial for the 17 year old began this week and that 17 year old is quoted as saying “I am not going down for a muppet."

Although the autopsy showed that Brent never lifted a finger or fought back against his assailants, it did reveal that he died from a massive head injury and had suffered at least 18 separate blows to the head and neck.

This makes me sick to my stomach, even more so because this crime happened last August. Why didn’t we hear about it? Why wasn’t it reported on the news programs like the death of Matthew Shephard, the young man who was killed because he was gay? Did Brent’s disability make him so unimportant that his brutal death did not even deserve a mention? Prejudice against disability is every bit as unacceptable as racism, sexism and homophobia. Ignoring Brent’s death is even more unacceptable.

Click here for a media story on the trial.

When The Moon Come Up

I blogged previously about the human atrocities chronicled in the report "Christmas In Purgatory." Casdok at the Mother of Shrek blog shared this video on that same subject. It was authored by disability advocate Norm Kunc, and I believe needs widespread distribution.