"Why Our Perspective and Presence As People with Disabilities Matters"

Ruth, from Wheelie Catholic, writes of society's need to better understand and respect the perspectives of people with disabilities. She says that this understanding and respect is essential to real inclusion.

I know from my educational experiences that a major hurdle is getting an able-bodied teacher or staff member to recognize that I have a perspective that is likely unfamiliar to him or her. Of course, recognizing that people with disabilities have unique perspectives isn't even remotely possible if respect for our humanity doesn't exist first.

UN Disability Treaty Open for Signature Today

"The existing human rights system was meant to promote and protect the rights of persons with disabilities, but the existing standards and mechanisms have in fact failed to provide adequate protection to the specific cases of persons with disabilities. It is clearly time for the UN to remedy this shortcoming."

United Nations Human Rights Commissioner Louise Arbour

Today, in a ceremony at the United Nations, the U.N.’s Convention on Rights of Persons with Disabilities becomes open for signature. More than 70 countries are expected to ratify it.

The treaty was first adopted by the U.N. in December after three of years of negotiations, the fasted negotiated treaty ever. Representatives from more than 350 disability organizations worldwide attended the ceremony. Disability rights organizations from around the world came together to work for a treaty that would establish and fight for the rights of all people with disabilities.

Thomas Schindlmayr of the U.N. Department of Economic and Social Affairs summed up the treaty’s goal, “It’s not asking for persons with disabilities to have any new rights. It’s not asking for anything else that other people don’t enjoy already. It’s asking that persons with disabilities enjoy the same opportunities in society that everybody already enjoys.”

Thinking

Many thanks to Dream Mom who has nominated me for a Thinking Blogger Award. It is an honor to win this award from a fine blogger, and I really appreciate it. For those of you that have not checked out Dream Mom’s blog, I urge you to do so. Dream Mom writes very eloquently about her experiences raising Dear Son.

Dream Mom nominated me for this award because my blog was one of five blogs that made her think. In keeping with the tradition of the award, I now get to give this award to five blogs that make me think.

It was not an easy decision to decide which blogs to nominate. I've only been blogging for six months and have discovered many wonderful, thought provoking bloggers. Here are five of them.

1. At Diary of a Goldfish, Goldfish writes about the arts, culture and disability. She organized the first Blogging Against Disablism Day last year. This project had 147 contributions from all over the world.

Goldfish writes openly about many different life issues including disability. She looks at the issues with a thoughtful, reflective approach and always has an interesting perspective. She makes me think about my disability. I also enjoy learning about disability from a British perspective.

2.) Imfunnytoo at Midlife and Treachery (formerly Did I Miss Something also blogs about disability issues. She always has interesting observations on her life and issues affecting all of us. She is a wonderful writer with a very quick wit. She really helps me to look at life with a sense of humor.

3. Kathryn, at Ryn Tales, is the mother of four-year-old Ellie. Like Dream Mom, she writes about her experiences and thoughts about being the parent of a child who happens to have a disability. She looks at life issues from many angles, but mostly from the angle of a mother's love.

4.. I’ve learned so much about disability history, disability law, and disability rights from Penny Richards at Disability Studies. Penny's posts always teach me something new. For example, today Penny writes about reasonable housing accommodations. Penny started up the disability blog carnivals, a source of lots of thinking organized around themes.

5. I discovered Dave Hingsburger's blog, Chewing the Fat, just recently. Dave shares stories from his personal life and his work life. In his work, he conducts workshops with people with disabilities to teach boundaries, self-respect, and self advocacy. In The Good Girl, Dave shares the heart wrenching conversation with a young lady whose only goal in life is to be polite. In Conditions, Dave shares an experience with a young woman who has something to teach us all about self advocacy in relationships.

The rules and origin of the award can be found here. Bloggers that I nominated - you now choose five blogs that make you think. Be sure to include the link to the original site, as that is one of the rules, and choose blogs that has not been previously chosen.

Thanks again, Dream Mom, for nominating me.

Other blogs that make me think and have already won the Thinking Blogger Award are:
The Gimp Parade, Wheelie Catholic, Planet of the Blind, Wheelchair Dancer, and Ballastexistenz. There are lots more, too. Check out my blogroll for starters!

Hope on the Carousel

Alex, who is a few years younger than me, and I were both in our church’s children’s choir for several years. Now, Alex is in the teen choir while I’m in the adult choir, so we only sing together at Christmas and Easter. Alex is a senior at a Chicago public high school and plans to major in music when he goes to college in the fall.

Alex has a lead role in his school musical, Carousel. He plays the tragic hero, Billy Bigelow. Last night, several members of our church, including me, went to see Alex in his play. Alex had been enthusiastically talking about the musical for weeks and I was excited to see him perform.

Whenever I go out, I can't help but notice accessibility and inclusion. I don’t mean to obsess, but there is so much exclusion in attitude, policy, and practice most everywhere, that it’s hard to miss. But last night was unique.

When we pulled into the parking lot, there were many handicapped parking spots right in front of the entrance. We proceeded through the power double doors. When one of the power buttons wasn't working, a stranger went off to tell the manager. The high school auditorium was a modest size and had multiple wheelchair seating choices. Even though I was the only audience member in a wheelchair, it was refreshing to see such an inclusive attitude towards the diversity of potential audiences.

I comfortably settled in to watch the show. Alex's beautiful, strong, baritone voice and fine acting ability wowed the entire audience. He was fabulous! The entire cast put on a wonderful show.

And I loved that no big deal was made of the fact that the actor who played the romantic, male lead, Mr. Snow, had a visible physical disability and used a power wheelchair. The actor had a strong tenor voice, was a fine actor and was fully included in the show. His character romanced the female lead quite convincingly.

Of course, I am not at all surprised that a person with a disability can sing, act, and play a romantic lead. What surprised me was that the director used the most capable actor for the part, even when that actor would not typically be thought of in our society as being able to portray such a character. What's more, to the audience, it appeared effortless and natural.

I think that it’s really neat that Alex never told me, “Hey, David – one of the leads in my play uses a wheelchair.” It wasn’t a big deal to Alex – he saw me as David and his fellow actor as Joel. He never thought it relevant that we both use a wheelchair.

I was also struck by the audience’s genuine appreciation for all the actors’ performances. No inspirational mumbo jumbo. No phoniness. No pity. All the performers deserved and received hearty applause.

(The only evidence that I was still on planet Earth came five minutes after the show ended. The audience was filing out of the auditorium. A lady came up to me and told me what a wonderful voice I had. It took me a moment to catch what she meant. She thought that an actor had jumped off the stage into the crowd all while changing skin color, hair color, body type, physical impairment, wheelchair brand, and costume, and was now in front of her exiting the auditorium.)

I came home feeling encouraged and hopeful. Here was an experience that fostered real inclusion. This school gave its students the opportunity to see one and other as fellow human beings, each capable of hard work, talent, and even romance. These young people are future leaders, health care providers, business owners, and caregivers. Some have or may develop disabilities. They have been given the foundation of seeing people as people.

Description of picture: colorful carousel horse

Dehumanization: Two powerful posts

Ruth, from Wheelie Catholic, writes a personal, real life post about the issues people with disabilities face with personal care attendants (and I would add often with other service providers, too.) She points out some of the ways disrespect can be manifested by caregivers in the lives of their clients. She also addresses the reluctance many people feel in bringing up these issues for fear of losing much needed service. One of the commenters who details neglectful care does not leave his/her name, because "I'm afraid."

Steve Kuusisto, at Planet of the Blind, sadly reflects on the disrespect of one group of people by another group of people when the issue of combining schools is raised in his town. He wearily speaks of the disdain of some members of the deaf community towards others with disabilities. The disability hierarchy rears its ugly head again.

Carnival #11

The disability blog carnival is up at All About Abilities and Disabilities. Alexander has put together a wonderful collection of links to stories, personal experiences and viewpoints on the many aspects of living independently.

Thanks to Kay for this picture of sculpture of Alison Lapper, and to Penny for this link to Marc Quinn's description of his work. The sculpture is on display in Trafalgar Square.

3-21 World Down Syndrome Day

UPDATE: Here's a blog written by Edward Barbanell, an actor who has Down Syndrome and who has been writing a blog for more than a year. Thanks, Michelle.

Today, March 21, is World Down Syndrome Day.

From Down Syndrome International,

"Down Syndrome International (DSI) has officially earmarked 21 March as World Down Syndrome Day (WDSD). The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. Singapore was selected to launch the inaugural WDSD in 2006. The event, held at the CHIJ Secondary School in Toa Payoh, in the heartlands of Singapore was very successful and well attended. Many other organisations worldwide joined in the celebrations with events and activities in their respective countries.

This year the theme for 21 March 2007 is "Celebrating Diversity", to continue creating awareness about Down syndrome and promote acceptance of diversity.

All DSI members and related organisations worldwide are encouraged to observe the WDSD together with the community in an appropriate manner.”

Other Down Syndrome advocacy organizations:
National Down Syndrome Society and National Association for Down Syndrome

Blogs by parents with children with Down Syndrome:
(I could not find any blogs written by people with Down Syndrome.)

Big Blueberry Eyes
Down Syndrome Life
Postcards From Holland
The Education of Emma Sage
Jaden’s Journal

Welcome to Holland is Emily Perl Kingsley's famous story comparing the experience of her son Jason's Down Syndrome with an unexpected trip to Holland.

Independent Living

Last week, at my request, an occupational therapist and 2 rehabilitation engineers from the University of Illinois Chicago Assistive Technology Unit came to my house for an evaluation of a couple of my needs – a cell phone that I can use independently and a custom tray that will allow me to use my laptop, voice recognition software, and large Kensington trackball in my wheelchair. I had used the A.T. Unit’s services once before for a household adaptation and had had a very positive experience. Usually when I meet with service providers, I prepare myself for disappointment – disappointment in the attitude, capabilities, effort, and vision of the service provider, because that is the norm. But, this time, based on my past experience with A.T. Unit, I was feeling cautiously optimistic. I was not let down.

Here’s how the visit went…

First, they came on the same day that the said they would, and they even called to let me know that they were going to be a little late. Courteous. Respectful of the value of my time.

When they came in the door, they made eye contact with me, introduced themselves, and said hello to me. They were respectful to my mom, but recognized me as their client. More respect. Professionalism.

Then they asked me about my needs and my goals. More respect. They didn’t ask about my diagnosis or my “problems”; they weren’t relevant to the problem-solving. No pity, no shame, no getting off track.

The A.T. service providers never questioned the value of my goals; they accepted them as worthy, because I said they were important to me. Client respect.

The 3 providers were incredibly detailed in their evaluation of my needs – taking measurements and photographs, and asking specific questions to make a thorough assessment. They bounced creative ideas off of each other and off of me and my mom. Goal-oriented teamwork with a real effort to address my needs.

I am excitedly looking forward to see their solutions. To have my own cell phone would allow me control over my own phone calls. It would allow me to be out without a personal assistant, knowing that I could call for assistance if needed. The adapted tray will allow me to use my laptop computer set-up at college for note-talking, paper-writing and any other work that I need to do.

The Assistive Technology Unit at UIC is an example of an organization that is supportive of my life goals, supportive of my desire for independent living.

If I want to live independently, does that mean that I have to do everything for myself?

No. If self-sufficiency were the definition of independent living, then nobody lives independently these days. The pioneer families may have grown their own grain, milled their own flour, baked their own bread, sewed their own clothing, and built their own houses. But today, everyone I know lives interdependently within their community, both receiving from and contributing to the community's well-being. We have farmers, carpenters, artists, teachers, housekeepers, computer technicians, journalists, etc., each offering to the community and each receiving from the community.

I see myself living interdependently in my community. I know that I have talents to offer, and I know others have talents that I can benefit from. I hope I can put everything together, and be in charge of my own life, making my own decisions. Interdependence and autonomy is my definition of independent living.

I'm willing to work hard to develop my talents, and I realize that I will have to make some compromises, maybe where and how I live. What I don't want to compromise is my autonomy, my ability to make choices and decisions for myself and for my life.

I think the greatest obstacle to my autonomy is society's reluctance to recognize me (and others) as a full member of the community, to recognize that the talents I give and the services I receive are on the same par as those of every other member of the community. The services that I need are not charitable services that a provider can provide when he or she finds it convenient. I do not need to be grateful for jobs done halfway or inadequately, nor accepting of disrespect of my personhood.

My need for clearing of snow-covered curbcuts is as valid as a driver’s need for clearing of snow-covered streets. My need for a personal care assistant is no less valid than a working parent’s need for capable childcare. My need for prompt, precise repair of a broken piece of necessary medical equipment needs to be respected as much as the need for any community member to have a repair of a gas leak in their basement. My need for a textbook on tape on the first day of class is no different than my classmate’s need for a hardcopy of the textbook on the first day of class.

My experience with the UIC Assistive Technology Unit gives me hope for the future –hope in others’ ability to respect and serve me, and hope in my ability to contribute to others.

Description of picture: Me, laying on my mat table and working on my laptop with my trackball and voice recognition equipment

Kay Olson: "Anniversary--Escaping Institutionalization"

Reflecting on the fact that the outrageous conditions faced by our veterans at Walter Reed Hospital’s outpatient facilities is similar to the conditions faced by many non-veterans every day, Carol Marfisi, from Disability Studies, says,

"What disturbs me is that the same deplorable conditions and substandard care and services are every day occurrences in the lives of many people with disabilities, as well as the elderly, who are living in nursing homes and long-term care facilities. The United States government is quick to covet credit as the world's most developed and advanced country yet under its very eyes, we see physical, emotional, and sexual abuse in these facilities."

Kay Olson reflects on her 1 year anniversary of “escaping institutionalization”. It is a powerful post. Please, please go read it. Without the diligent advocacy of her parents and rehabilitation staff, she would have fallen victim to the cavalier attitude of an insurance agent who wanted to place her in a nursing home unfit for habitation. Kay believes that had she gone to that nursing home, she would have died from respiratory problems or from some other cause.

Thank you, Kay, for sharing such a personal and painful story. I have learned a lot from you over the past 6 months about advocacy, dignity, inclusion and attitude.

I found Kay’s post upsetting for many reasons. Here are a few.

-The nursing home conditions she describes are appalling. They remind me of the conditions I read about in New Orleans’ nursing homes, the conditions that didn’t come to light until after we saw people abandoned with Hurricane Katrina.

-I am amazed at how “easy” it is for a person to be dumped, abandoned and discarded.

-I can see this experience being a possibility in my future.

-I have parental support. Kay has parental support. What about people who don’t have a support system in place?

-Kay’s story may be the exact situation that Ashley X’s parents were afraid of, a fear that led them to mutilate their daughter under the false assumption that she would then be “safe” from the horrors of institutionalization.

-Maybe this is how some people jump to the conclusion that euthanasia is a choice. The nursing home option seems to be saying, “Your life is worthless. It’s best for you to die, and we’ll give you a push.”

We need change! As a society our values and priorities, and the resulting allocation of resources are very wrong. Tragically, immorally wrong.

Carnival #10

The 10th Disability Blog Carnival is up at HIV/AIDS, Deafness & Disabilities. This carnival is a discussion and set of links on the topic of HIV/AIDS and disability. The author, Leila Monaghan, says, how much in common "people living with disabilities and people living with HIV/AIDS have and yet how distant from each other are the web communities of people with disabilities and people with AIDS."

"in some sense, we should all just be people... "

Natalia, from My Spanglish Life, made this comment to my Disability and Gender Stereotypes post for Blog Against Sexism Day.

Natalia gives a link to a wonderful story illustrating that point. A shopper and a sales clerk are at a loss for what is the appropriate gift for a newborn with Down Syndrome. A helpful stranger, Dave Hingsburger, has the perfect gift suggestion.

Disability and Gender Stereotypes

Today is International Women's Day. In the blogging community, this day has been designated "Blog Against Sexism Day". You can learn more about the day, find statistics relating to sexism, and get links to hundreds of posts here.

Initially, I was going to show my support by just linking to the posts, but then I read the organizers' words, "We especially encourage men to challenge themselves and write about the topic." So, I've been thinking about sexism and disability. I'm familiar with and have experienced ableism. And, I think that there must be an overlap between sexism and ableism. I'm just not always sure where the line is drawn. Here are a few of my thoughts.

Had I been born a girl with a physical disability, would people react to me differently? Would strangers comment on how pretty my wheelchair is rather than how fast it goes? Would my parents get more or less "I'm so sorry” glances? Would I have been encouraged to get princess casts and splints rather than sports casts and splints? And would these and other differences have changed my self-image?

With a few exceptions, my closest able-bodied friends are people I first met when I was very young. For a child with a disability, it becomes harder to make new friends in late grade school and high school. Most of my more recent able-bodied friends are female. My female friends with disabilities tell me that most of their recent able-bodied friends are male. Why is it so hard for teenagers to form same sex friendships crossing ability boundaries?

By their very nature, both ableism and sexism put a person down, with the result often being lowered self-esteem. Ironically, my peers who are female and have a disability appear to me to be tougher and more assertive than many of my peers who are female and have able bodies. Those with disabilities seem to be far less caught up in, and even laugh at, the cultural pressures on women to conform. How does disability affect sexism?

And what about Ashley X? Would parents of a 6 year old boy with a disability have been able to convince medical personnel and an ethics committee to surgically and hormonally alter their son to stunt growth? Can a boy be a "Pillow Angel"?

I look forward to reading the other posts.

"It's not the disability, stupid"

Ruth Harrigan, of Wheelie Catholic, has another website called A Different Light with fiction, essays, and poetry about disability. In this essay, she writes about a valuable and thought-provoking conversation she had when she was newly disabled with a friend who had had a disability since birth.

“When the Slippery Slope Becomes a Mudslide”, Exceptional Parent’s Statement and Plan of Action on the Ashley Treatment

Exceptional Parent Magazine, a resource for parents of children with disabilities, issued a strong statement condemning the "Ashley Treatment". They refer to the historical abuse of children with disabilities through involuntary sterilization, institutionalization, and neglect, and they examine the current abuse of children with disabilities in Switzerland and the Netherlands. They urge healthcare professionals, private foundations, governmental agencies, and disability organizations to publicly denounce these abuses. Exceptional Parent pledges their commitment to stand up for the rights of all people with disabilities, giving a detailed and comprehensive listing of their plans. A few of the things that will be doing will be writing articles, hosting online seminars, keeping an eye on national and international disability issues, and inform families how to access community supports and navigate the educational system.

College Challenges

“Christine” is a fun-loving, self-motivated sophomore at a major state university located a few hours from her home. She candidly shared her transition-to-college experiences. In her senior year of high school, Christine searched for a college that had wheelchair accessible academic facilities and dormitories as well as strong, reliable support services.

For all students, heading off to college for the first time presents new challenges. For Christine, one of those challenges was hiring, meeting, and adjusting to caregivers other than her parents. Several weeks before school started, her university's Office of Disability Support Services gave Christine a list of townspeople interested in employment as a personal assistant. Christine interviewed applicants over the telephone, and, sight unseen, hired those she thought best qualified. On the first day of school, after her parents helped her get settled in her dorm room, one of her newly hired personal assistants helped Christine with her nighttime needs.

Christine needs a personal assistant twice a day, in the morning to help her get out of bed and ready for the day and in the evening to help her get ready for bed. Throughout the day, Christine receives meal setup help from food service personnel, and help from friends with any tasks that she is unable to do independently. With the help of her professors, she hires classmates to take notes for her.

One who is inexperienced with service providers might think that once Christine hired a few personal assistants from the school's list, she was set for the school year. Nothing could be further from the truth. Dealing with all aspects of caregiver issues is a constant challenge. Christine says it's the biggest challenge of college life. Her personal assistants have not always been reliable; Christine was stuck in bed one morning when one assistant failed to show! A few of her assistants have been incompetent; some have treated her rudely or condescendingly. Christine has fired assistants. In addition, she has had to deal with a high turnover rate, teaching each new assistant how to meet her needs.

Now that Christine is in the middle of her second year at college, she has found that she prefers finding her personal assistants from among her fellow college students rather than from the Office of Disability Support Services’ list of townspeople. She feels more capable of judging in advance whether the college students will work out work out because she knows them personally. Christine has been more successful at finding respectful, competent assistants from among her peers. To deal with turnover issues, Christine always a few backup assistants ready so that she can assured of being functional each and every day.

Some of Christine's personal assistants have been her friends. This situation requires some special attention. On the one hand, Christine likes having a friend as a personal assistant, because she has a trustworthy, respectful caregiver who knows her needs. On the other hand, Christine recognizes that there is a potential for a strain on the friendship. Christine openly discusses this risk with her friend, emphasizing that the friendship is more important than the assistant position.

Christine's transition to college has been successful. She loves being able to live independently and is enjoying college life. She has developed wonderful friendships. An observation that Christine made is that college students are better able than high school students to look past superficial differences to form genuine friendships.

Christine's long-term plans include a graduate degree in social work, with the goal of working in disability advocacy.