Carnival!

Another carnival is here!

Check out the fabulous three act carnival on disability history and disability in the arts over at Disability Studies Temple U. Penny has put together a bunch of great posts and even some food!

My Autistic boy and other adventures in fatherhood

Last November, my blog and Jerry Grasso’s blog were both featured at the AOL Ability Site of the Day on the same day. Jerry writes about his life, in all its glory and variety, as the dad of Maya and Demetrius. Check out this hilarious post about Demetrius and Maya getting hold of the camera.

Jerry says, “hey, life is life...it is what we are trying to do with it that counts!"

Jerry asked me several weeks ago for an interview. He patiently waited for my answers to his questions and posted them today on his blog. Another interesting person in the blogging world.

Thanks, Jerry.

Less visible disabilities of our soldiers

In the previous post about the health and social support needs of returning soldiers, Lee commented on the tendency to overlook their mental health needs. I very much agree with Lee that our society has a great deal of difficulty addressing less visible disabilities. Here’s a comprehensive study by Walter Reed Army Institute of Research, reported by the Los Angeles Times, looking at the mental health experiences of soldiers returning from Iraq. It says that more then one-third of soldiers sought "psychological help" in the first year after returning home.

Another tragic effect of the Iraq war

I know other bloggers have already covered this issue, but I believe this report needs to be heard.

As a result of the war, the number of Americans with disabilities is dramatically rising. While the number of American soldiers dying in Iraq is widely reported by the media, the number of soldiers that are wounded in Iraq is far less reported. According to Linda Bilmes at the Kennedy School of Government at Harvard University, for every soldier fatality in Iraq, there are 16 wounded soldiers. Because of advances in technology, more soldiers are surviving serious injuries and will come home needing strong healthcare and social support services. According to this author, the Veterans Administration does not have the resources to meet these high demands. How appalling. How sad.

Reflections: The "Ashley Treatment"

The “Ashley Treatment” has been on my mind and in my gut all week – from the comments on my blog, to the words of other bloggers, to the media coverage, in discussion with others, and in my private thoughts. Being immersed to this level has been painful, thought-provoking, and enlightening.

I come back to my firm belief in the dignity of all people – not a dignity based on race, gender, religion, country of origin, economic status, or ability, but a dignity based on shared humanity.

I regret saying that Ashley’s parents lost their dignity by their action. I believe that each person’s dignity is God-given, and not losable. Many commenters felt that they were able to put themselves in Ashley’s parents’ shoes and faulted me for my harsh words towards them. In my strong emotion, I said that Ashley’s parents did not have dignity – this was wrong.

Like her parents, I believe that Ashley also has a dignity that is God-given. Ironically, very few people seem to be able to put themselves in Ashley’s shoes. Given that 1 out of 5 people in America has a disability, and that most of us will have a disability at some time in our lives through illness, accident or aging, this reaction should be somewhat surprising. But, to me it is not surprising - because those with temporarily-abled bodies cannot imagine themselves with a disabled body. And this lack of imagination and even fear can have disastrous consequences.

I feel weariness and sadness that we live in a society where a parent feels that medically and surgically altering a 6 year-old’s body to deal with growth is their only choice; a society where medical and ethical professionals actively encourage this desperate measure, rather than actively and creatively encouraging modification of our social systems to provide practical, economic, health, emotional and respite support of their clients (both child and parent); a society where many are angry with those who bring such injustice to light.

Blue/Kay Olson, of The Gimp Parade, has a reflective post expressing her weariness

“because fear and hatred of disabled people hides in people’s hearts in the same way as sexism, transphobia and racism.”

Imfunnytoo at Did I Miss Something also addresses the

“unbelievably systemic fear of us and hatred of us and labeling of us and arrogance towards us that this has opened up.”

Writing from the Birmingham jail in 1963, the Rev. Dr. Martin Luther King, Jr. addressed the importance of bringing hidden injustice to light.

“Actually, we who engage in nonviolent direct action are not the creators of tension. We merely bring to the surface the hidden tension that is already alive. We bring it out in the open, where it can be seen and dealt with. Like a boil that can never be cured so long as it is covered up but must be opened with all its ugliness to the natural medicines of air and light, injustice must be exposed, with all the tension its exposure creates, to the light of human conscience and the air of national opinion before it can be cured.”

I have noticed in my own life, in my talks with peers with disabilities, and in my interviews for my project that each person speaks of experiences in which they have been dehumanized – sometimes in an obviously hateful and discriminatory way, but at other times in a more subtle, seemingly “nice”, but equally dehumanizing, way, as though they are more “special” than other children.
Andrea, from Andrea's Buzz, writes,

It’s hardly not a new trend. But this millennia-old attitude does a terrible disservice to disabled people everywhere to be cast as either devils or angels. It is dehumanizing, and removes us from our humanity, and thus our basic human rights.

Being disabled is seen as a condition so horrid that no one could imagine living a happy, (otherwise) healthy, productive life. Not despite the disability, and not especially with the disability or even because of the disability. Being disabled is a fate worse than death. It turns a person into a “toxic train wreck” or it’s “worse than cancer” (because a person with autism, unlike a person with cancer, has a normal lifespan). So horribly unimaginable is being disabled that euthanasia is often deemed acceptable and even an appropriate “solution” to disability.

It has been not very long since people with various disabilities (and other differences) were routinely institutionalized (unfit for being in human society), and often sterilized. A person could be subjected to forcible surgery for such eugenic reasons as being blind, deaf, epileptic, poor, of a native (aboriginal) race, of mixed races, alcoholic, having a physical deformity, cognitive disability or perceived mental illness. Had I been institutionalized as a teenager, my children might not exist.

Being disabled is also seen as a condition where a family is divinely blessed to have been given such a special child who is looked after by angels. I’m not slamming those parents who feel that their children are blessings, but rather saying that all children are such – having a disabled child in the family does not earn a person extra cosmic “brownie points”.

The angelic disabled person is not-quite-human, a tragic but romanticized virgin on a pedestal of virtue. Certainly not an everyday sexual adult; a female person should never do anything as inconvenient as menstruate. Like 19th-century women, the disabled are sometimes cast as cherubic, above the base animal instincts of men, and held in divine favor.”

…“An insidious side effect of freakifying the disabled as devils and angels is that it not only creates the disabled as Other, but it also does a great disservice to those who view themselves as nondisabled: it makes a person glad to be normal, and content to be average. It perpetuates the divisions and reinforces the dualities. With such positions, we can never create inclusivity.”

For those of you with no personal experience living with or caring for a person with physical disability, there are ways of doing many of the things that are difficult. For example, I, weighing about 140 pounds, have a lift that my parents use to lift me off of the floor. I also have a wheelchair that reclines and lets me change position to minimize the wear and tear of staying in one position for an extended period of time. When I was younger, I had respite workers. These were people that were paid by our community support services, chosen by my parents, who took me out for fun, while giving my parents a break. I enjoyed spending time with them, we developed a good relationship.

Dream Mom cares for her 15 year old son with physical and cognitive disabilities.

“I thought it might be interesting to share with you, a few final thoughts on some of the concerns or issues that Ashley’s parents raised on their blog. The purpose of this exercise is to help people who do not care for severely disabled children, and to add some questions and/or comments as food for thought. Certainly every solution has its benefits, as the parents pointed out, like removing her breasts so she wouldn’t get breast cancer, however because it is a solution with a benefit, doesn’t mean it was the best solution for a six year old…”

It’s an informative post for those unfamiliar with the daily living with a disability. Of course, each person’s disability is different, and ways of doing things vary, too. But, the point is, people do and have found ways other than surgery to address daily challenges.

And when we don’t have a ready solution for a family’s challenge, let’s look at modifying our systems, before rushing to modify people.

Is it OK to judge a parent’s actions? If parents mean well, is that sufficient to justify a community letting them do as they wish? Recently, a story was in the news looking into parents who caged their children at night, because they felt it was in their children’s best interests, and because they felt it was the only way for the parents to get a full night’s sleep. We periodically see parents before the judicial system when they, for personal or religious reasons, refuse to give their children antibiotics or other medicines. A community does have a responsibility to be a safety net for children and to look at out-of-the ordinary situations.

Here’s what Penny Richards, from Disability Studies at Temple U, says

“Sorry… but ‘Never judge these parents unless you live in their home permanently’ just doesn’t work as a bottom line for policy. In a community, there are basic standards of decency that have to override parents’ decisions when a child’s welfare is at stake. We don’t let our neighbors hurt, neglect, or endanger their children, even if they say it’s all about love and they believe it’s for the best. We make laws to prevent it. And a disabled child has just as much right to that community attention and protection as any other.”

I do believe that each of us has a responsibility for one another. Standing up for the rights of all is challenging. It feels daunting to me. But, Ruth, from Wheelie Catholic, eloquently observes that the challenges we have faced living with a disability have prepared us well.

“…those of us with disabilities are able dealers, resourceful as a matter of necessity as we have had to adapt to a world that gives us unequal treatment in areas ranging from its architecture to its social programs .

By setting and maintaining seemingly insurmountable obstacles, our society has instilled in us the very traits we need to face the discrimination it is so reluctant to admit. We are resilient, strong and courageous.”

… “We must wade our way through the current waters of change, always keeping in mind the greater common good for our next generation. This means keeping an open mind not only toward the issues at hand, but toward each other.”

Again, I apologize for my out-of-line disrespect for Ashley’s parents’ dignity, while I continue to stand for Ashley’s dignity.

I intend to take the many lessons I am learning from this experience back to my interview project, as I continue recording the personal stories of people growing up with disabilities.

A further note: Agree or disagree, I welcome all respectful comments. I will, from here on, be deleting rude, foul comments.

Disability Blog Carnival #6

Check out Disability Blog Carnival 6 by Emma at The Life and Times of Emma. The theme is Disability and Relationships. I didn't submit anything this time. The entries look interesting, varied and honest. Enjoy!!

Modify the System not the Person

From the Disability Rights Education & Defense Fund:

"Benevolence" and "good intentions" have often had disastrous consequences for the disability community.

and

We deeply empathize with parents who face difficult issues raising children with significant physical and intellectual disabilities. However, we hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct. (my emphasis) For decades, parents, families, and the disability community have been fighting for this principle, and for community-based services for children and adults that make it a reality. Their advocacy led to enactment of state and federal laws in the 1970s that establish extensive rights to full personhood for children and adults with disabilities. These laws were passed to remedy our shameful history of abuse and mistreatment of people just like Ashley.

and

As parents and adults with disabilities, our experience demonstrates unequivocally that all people with disabilities can be an integral part of home and community, if needed help and support is available. It is not always easy to find home care workers who are competent and empathetic. Too often, we must fight to persuade social service and healthcare bureaucracies that help at home and appropriate equipment such as adapted wheelchairs and mechanical lifts are essential and fundamental to our autonomy. However, if these problems seem insurmountable, or cannot as a practical matter be surmounted, as Ashley's parents suggest, then it is all our duty to change the system so it works rather than find novel ways to modify people so that they will more easily "fit" a flawed system. (my emphasis)

And this question...

Where, we wonder, was the network of programs and services that exist in every state when Ashley's family decided the best option was to employ medical procedures that violated their daughter's autonomy and personhood?

And finally, they note the sad irony of the treatment of this child and the recent United Nation Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities.

You can read the whole statement from the Disability Rights Education & Defense Fund here.

CNN tonight

Paula Zahn Now on CNN will discuss the Ashley Treatment. They seem to be looking to include the points of view of the bloggers in the disability community.

A mother and father’s betrayal

Update: See January 15 post.

Ok. Here I go. I am tired of the profound sadness that is filling my head 24/7.

When I first heard about the “Ashley Treatment”, I was appalled. I checked out the family’s website. I was more appalled.

I have been reading insightful, articulate reflections* by fellow bloggers. My family and I have talked on and on and on about the situation. But, still, I had remained a little detached (not much!) and didn’t want to write about the topic. My interview project and my blogging have been fun, up until now. But, tonight, I have changed my mind.

Ashley has cerebral palsy. I have cerebral palsy. But, most importantly, Ashley is human. I am human. Ashley is me. I am Ashley. And you are Ashley, too.

Ashley’s “parents” are afraid that their daughter would grow physically to be a young woman. I am a young man. I have a severe disability. I cannot sit up by myself, I cannot walk, I cannot go to the bathroom independently, I cannot prepare meals, I cannot use utensils very well. I cannot wipe my own butt. I drool. I weigh about 140 pounds, I am 5’9” tall. I am uncomfortable spending a lot of time in my wheelchair, I prefer to lay on the carpet. My mom can no longer lift me off the floor; my dad can barely lift me off the floor.

I have been disrespected and mistreated at times in my life. My parents have always gone to bat for me and now, with me. What strikes me tonight about the “Ashley Treatment” and has brought me to tears is that the very people in all of society whom this child should trust, have betrayed her. When you grow up so dependent, so vulnerable, you need someone to love you wholly and unconditionally. The rest of society may disrespect you and put you down and make you think less of yourself and make you think you are not a human being, but your parents?! Your parents?! I am my parents’ child, they know that I am a human being. Not an angel, not a pet. And, I learn from them that as a human, I have human dignity.

Ashley’s parents have committed the ultimate betrayal. They have treated their daughter as less than human, not worthy of dignity. But the truth is, they have lost their dignity.




*The thoughtful, insightful reflections:
Blue/Kay Olsen: Ashley Treatment

Imfunnytoo: It begins with Ashley

Mary Johnson: Ashley’s treatment in the media

Penny Richards: Sigh

Dream Mom: Pillow talk, the debate over the Ashley treatment

Corey Silverberg: When disability gets in the way, stunt it.

Nufsaid: The Ashley Treatment

Wheelchair dancer: Human Rights

Ruth Harrigan: The Ashley Treatment

Updated-
Thirza Cuthand: I am not responsible for your discomfort

Disability rights are human rights.

On December 13, 2006, the United Nations General Assembly adopted the Convention on the Protection and Promotion of the Rights and Dignity of Persons With Disabilities. This document formally affirms the rights of people with disabilities as human rights. It aims to ensure that people with disabilities are full contributing members of society and to end the discrimination that the 650 million people around the world who live with disabilities experience each day. The convention includes such rights as education, health, and work for people with disabilities.


"Today promises to be the dawn of a new era -an era in which disabled people will no longer have to endure the discriminatory practices and attitudes that have been permitted to prevail for all too long,” said then U.N. Secretary General Kofi Annan. He had strong and insightful words about the treatment of people with disabilities throughout history. Annan urged all 192 member states to ratify the convention.


According to the U.N. News Service, the convention “provides that States which ratify it should enact laws and other measures to improve disability rights and also abolish legislation, customs, and practices that discriminate against persons with disabilities."
Starting March 30, 2007, countries can sign and ratify the convention.

Hopefully this United Nations convention will make countries think about the lives of their citizens with disabilities in this new year. It’s a good first step. However, just saying disability rights are human rights is not enough. It’s up to each country to fully embrace this important principle. Actions speak louder then words.