Not Today… I have an appointment…

I haven’t been in the blogosphere much this summer. Early in the summer, I had a death in my family. But mostly I feel like I have been swallowed up by the appointment gods.

Other than regular physical therapy, I didn’t have too many health related appointments during the school year. As I focused on my first year of college, I had kind of forgotten about the appointment world, that medicalized life. But, now, this summer, I’ve had to pay the piper. Here’s how I’ve been spending my time over the past few months :

An MRI without anesthesia (MRI machines don’t like spasms)
An MRI with anesthesia
Bone density scan
Orthotist appointment for AFO check (Hey! I don’t need new AFO’s!)
Orthotist appointment for neck splint (splint was of no help)
Physiatrist appointment
Two dentist appointments
An orthodontist appointment
An eye doctor appointment
A pulmonologist appointment
Two sleep apnea studies (hard to sleep during those!)
Wheelchair maintenance (although my role was staying home without my chair; my mother went to this appointment and the 3 appointments for van lift repairs without me.)
Wheelchair repair (despite above maintenance, my chair broke at a highly inopportune time – away from home, just before I was to give a presentation at the Illinois Youth with Disabilities Leadership Summit)
Computer training classes to help me learn Spanish Dragon, Spanish Soothsayer Word Prediction, and increase my use of keyboard shortcuts (to decrease neck pain) once per week for several weeks.
A meeting with my Department of Rehabilitation representative
A physical therapy appointment three times a week most weeks.

Because I knew that this summer would be heavy on appointments, I opted out of summer school. Good decision. And, I regularly scheduled recharging time – including a great trip via Niagara Falls for my sister’s graduation in Massachusetts, several family gatherings and some serious downtime – movies, sports, games. Unfortunately, I was not able to work on any projects that I wanted to work on --- frustrating because the busy-ness of school is right around the corner.

During this summer of appointments, I reacquainted myself with the old challenges, annoyances, and vulnerabilities of this aspect of living with cerebral palsy.

1. TIME AND ENERGY
Appointments eat up so much time. So much physical energy and so much mental energy. Mentally preparing for the visit, physically getting ready to go to the appointment, the car ride, looking for a wheelchair accessible place to park our raised roof van, waiting in the waiting room. All this before anything is even accomplished. As a person with limited stamina, the time issue alone is major, even though I have learned a few tricks from others. Although health care facilities have accessible entrances, their procedure rooms, exam tables, and cafeterias tend to be one size fits all. Quite a bit of energy goes into figuring how to make things work for me. By the time I get home, my energy is sapped and it feels as though my day has been taken away from me.

2. PROVIDER AND STAFF SENSITIVITY
Some healthcare and service providers seem completely oblivious to the fact that seeing them is not the highlight of my week. Some, no, many, use the opportunity to tell me about what a difficult day they are having – a busy schedule, an "impossible" job, even another patient who is difficult. While these problems may make a valid impact on their day, I don’t want to hear about it. I often feel the unspoken message, “I hope you are not going to add to my hassles today, David.” And, listening to the secretary’s or repair person’s woes is just a waste of my precious time (see number 1). Just as I am not at this appointment to make someone’s day miserable, I am also not here to make the day pleasant. I am here to meet a need that I have. Simple as that. I am here not because this is how I’d like to spend my day, but because I need some tool or advice to be able to do what I want to do.


3. ETIQUETTE OF FAKE, NICEY-NICE SMALL TALK
There are some unspoken appointment etiquette rules that a patient must follow. And these can drive me nuts. I don’t know if small talk drives everybody crazy – maybe it’s just me or just because I have so many appointments, but I get really tired and annoyed with chitchat. I don’t always feel like being polite and making small talk with providers and staff. If I am tired from other stresses or in a bad mood, I feel like I have to hide that. There’s a performance aspect to many appointments that is difficult to describe – be nice, friendly, and sweet. And if I’m called “buddy” or “honey” by someone who is meeting me for the first time, I just smile. Sometimes I feel an underlying message that being liked gets better care. (This coupled with number 2 above multiplies the aggravation. And, of course, number 1 – my time- goes downhill as well.)

4. APPOINTMENTS ALWAYS LEAD TO MORE APPOINTMENTS. More tests, more procedures, followup appointments, etc., etc. I am learning from my mom to always question whether I really need X procedure and could I return in 6 months instead of 3 months and let’s have Test A while having Test B.

5. IDENTITY MOLDING
Finally, even though I think I am secure in my identity, multiple appointments could consume my identity if I let them. I have to tell myself that I and my time are worth demanding repair service or prompt attention for a need even when the provider finds the timing inconvenient. Running through my medical history or listing what I cannot do or being poked and prodded and told what’s “wrong” with me is really wearing on the self esteem. I try to keep my guard up, because you never know when an ego blow might come. I have to work to not let myself get sucked into the idea that I am defined by somebody else’s list of my “problems.”



I have to add that I have some wonderful providers and have met some wonderful staff – people who are thoughtful, respectful, and efficient with both their time and my time. I am so very appreciative of them, their expertise, and their attitudes. And I even have a handful with whom I do have a personal relationship. But, even under these circumstances, going to an appointment is never how I’d choose to spend my limited energy. There’s a lot else to do with my life!

Carnival Day!...A Bit Late

The 38th carnival is hosted by Kathryn at Ryn Tales and has the theme of Spirituality and Disability.

In her introduction to the carnival, Kathryn eloquently reflects on raising her daughter Ellie and how it has influenced her as a person. “But this experience in all is magnitude has helped me unfold as a soul. I am more patient than I was before, I am happier than I was before Ellie, and I am way, way less ignorant about disablism.”

In this carnival, there are many reflective posts on God and on life in general. It’s a great carnival and I hope you’ll check it out!

Carnival Day!

Stacey from Crip-power has put together a wonderful collection of posts. She states that this carnival “focuses on the celebration of disability culture, struggle, people, history and identity." There are many thought-provoking posts that examine identity and culture through different angles. I hope you’ll check it out!

Facing the mountain

“Even more shameful are my co-workers. People who work to support other people with developmental disabilities. They still throw that word around without thought while at the same time saying how much they care for those they work with. It makes me angry, but also feel hopeless and helpless. How do we stop it?”

This comment was left on a post by Dave Hingsburger about the pain and anguish caused to a teenager by the use of the word, “R#tard.” Dave was sitting in a hotel lobby near a girl with Down Syndrome, and saw her reaction when another teenager walked by and was teased by her friend who had accidentally dropped something, “Stop being so r#tarded, will you?”

Dave said of the girl he was sitting near, “Hurt flooded her face. R#tard pierced her heart, her soul…”

Although I have had many self-esteem reducing experiences in my childhood, I consider myself strong (thanks in part to the blogging community). But, like I’ve heard from people I have interviewed, old wounds of dehumanization can be violently and unexpectedly torn open.

Yesterday, my mom said she saw hurt flood my face. I felt my heart pierced. It only lasted a moment, but it was there.

I had let my guard down because I felt I was in a “safe” place, a major rehabilitation clinic. People with various impairments walked and rolled all around the building. I have been here many times, and the staff has been respectful, kind, and professional.

So, I never saw it coming. I was in an exam room for my 3rd appointment of the day. The door was open, and I could hear the lighthearted goings-on in the office area across the hall.

A staff member was having trouble using the stapler. Loudly, she proclaimed that she must be “such a r#tard!” She continued bubbly chattering with her coworker, and then called in her next patient from the waiting room.

The hurt, painful as it was, lasted just a moment. Then my emotions quickly went from shock to anger to sadness. I thought about the new parents, sitting in the waiting room with their twin 2 year boys, hearing that word in this place. This supposed shelter from the outside world. This place of support. These people of authority.

My mom and I deliberated about what action to take. It helps having a trusted person with you to sort through it all. We couldn’t speak with the staff member because she was in with her patient. My mom wrote her a note, and we decided to speak with the supervisor. The supervisor listened respectfully and apologized for her staff member. She said that the organization did indeed have language sensitivity training, but also stated that sometimes people have trouble with “slips of the tongue.” She also assured us that she would speak with the staff member. Today, we received a voicemail, with a sincere apology from the staff person, who said that she didn’t even realize that this word had slipped out of her mouth, and she was horrified at her action. She thanked us for calling her on this act.

It is so disheartening that this slur is so ingrained in our culture that even well-meaning professionals who work with PWDs, casually through their language, degrade and dehumanize the very people that they support with their services.

It seems that working to abolish the slur, “r#tard,” is like climbing a long stubborn mountain. It seems impossible to get to rid of a word that is so deep in our culture. Fighting dehumanization is wearying and exhausting. And yet I believe we all must keep at it. We must keep advocating. The only way to we can really change the culture and end the discrimination is to bring these issues to light.

Links: Wheelchair Dancer has a comprehensive post on the use of language and disability. Andrea and Penny Richards give lists of alternative words that do not put down as Penny puts it, “whole groups of perfectly decent disabled people in your disapproval.”

And, thanks to Andrea for this link: The “r” Word Campaign.

“Some people have mental retardation. While mental retardation is not a bad word, when used to describe someone or something you think is bad it becomes another thoughtless hurtful word. People with mental retardation are not bad, their condition is not bad, the prejudice and discrimination to people with mental retardation is BAD…and WRONG! Please stop using the word ‘retard’, it hurts people with disabilities.”

Mistaken Identity

I've seen it happen to able-bodied people once in awhile. Someone approaches and starts a conversation, and after a moment or two of confusion, there's a realization that the approaching person has mistaken my friend or family member for someone else – someone of the same race, similar height and weight, similar age, similar facial characteristics.

“I’m not who you think I am; you’ve got me mixed up with someone else.”

Humbly backing away, the bewildered individual is embarrassed and apologetic, “How silly of me! I’m so sorry.”

It might be surprising to hear that I have never been confused with a person of my same build, same age, same facial characteristics, same race. But, I, a brown-eyed, light-brown-haired white male, have been confused with males significantly larger than me, smaller than me, older than me, younger than me, and surprisingly, even of different ethnicities! A blond child, I was often mistaken in my own school by teachers, staff, and students for a dark complexioned student of Laotian descent who was much smaller than me, or, with an older blue eyed student who was 40-50 pounds heavier than me. Over the years, I have been mistaken as well for a black male and a male of Egyptian descent by people who know one or both of us. And, when I travel, strangers often mistake me for someone they know; it’s a regular part of visiting a new place.

My silliest incident of mistaken identity occurred when I was an audience member at a theatrical production. The show’s lead actor, onstage for most of the 2 ½ hour production, had just completed his final bow. The curtain closed; the lights came up and the crowd slowly started to leave the packed auditorium. A woman maneuvered her way over to me and said, “You have a wonderful voice.” She kept talking, and it took me a few minutes to process that she had confused me with the lead actor, a black-haired teenager of Indian descent with a very small build. Not only would the actor still have been in full costume, he would have had to do a major leap over the audience to get to the back of the theatre in such a short time.

How could this happen, you wonder? Why these repeated bizarre mix-ups??

Because in all these cases, both I and the person I am mistaken for, use a wheelchair.

And, in most cases, after I tell the offender, “You have me mixed up with someone else,” the response is not apologetic. No embarrassment. Just a laugh at the “coincidence” of it all. They seem to think that theirs was an obvious, easy, natural mistake that anyone would make.

You see, when you use a wheelchair, some people don’t look you in the eye, don’t take in your personal physical characteristics, let alone see you as a unique distinct complex individual. They see the equipment, not the person.

And this inability to see is where ableism starts.

I have come to believe that seeing someone for only the equipment, or for just one piece of his or her external appearance, is a root cause of discrimination. Seeing a wheelchair, a white cane, a speech impediment, a gender, a skin color and then making an assumption that we now know the individual gets us into trouble. When we believe that we know someone’s identity and that they and their “group” are one, not only are we wrong, we are arrogant and we open the door to justifying to ourselves our superiority. There begins the slippery descent down into the swamp of dehumanization.

If you have a story about mistaken identity, feel free to share it in the comments.

Be sure to check out the other posts for Blogging Against Disablism Day 2008. Thanks Goldfish for once again organizing this amazing event!

New to the blogroll

With the busy-ness of life, I've gotten behind on updating my blog.

Here are a few additions to my blogroll:

Radar: The Disability Network - This is a new blog from RADAR, the disability rights network of the U.K. They have a vision for, "a just and equal society whose strength is human difference." The blog has a varied mix of noteworthy stories.

Also from the U.K. - Ableize - a "resource directory of disabled aids information products services and advice," run for and by persons with disabilities.

Coping with disability has original articles on living with cerebral palsy, and also regular updates on and links to a variety of health, disability, and social news.

Disabled Soapbox - A wealth of advocacy for disablity rights, including right now the coverage of ADAPT activists advocating for (and being arrested for rallying about) the Community Choice Act in Washington, DC.

Bits and Pieces of Me is a blog written by a mom sharing her experiences as the parent of Lena and Kassie, her twin daughters born very prematurely.

My Disability Blog shares a wealth of information about disability and the social security system. Tim's most recent post, Being Prepared for a Social Security Disability Hearing, discusses the process and how to be best prepared for success.

Calling you: Blog against ableism/disablism!

On May 1, Goldfish will host the 3rd Blogging Against Disablism Day. (You can check out the last two B.A.D.D.s from the links in my sidebar.) This is a day of coming together to write about discrimination against persons with disabilities, also known as ableism or disablism. Last year more than 170 people wrote on a range of topics covering personal experiences, societal experiences, education, health, children, intersections with racism and sexism and more.

I really encourage YOU to share your thoughts and experiences. If you have a blog, read the details and sign up over at Diary of a Goldfish. If you don't have a blog, I'd be happy to post your writing here - just send me an email (address in my profile). This is a time for solidarity and support of one another. I especially encourage parents and allies to contribute. You don't have to have a disability to be opposed to discrimination against people with disabilities. All are welcome.

A note on language - there is a whole assortment of language about disability - handicapped, disabled, disability, etc. etc. May 1 is a day of language amnesty, write in the way that works for you. Goldfish has put together a language guide for reference.

Hope to see you May 1!

Carnival #36!

Disability Blog Carnival #36 is up over at Abnormal Diversity. The topic is a difficult one - ABUSE. Yet, it's such an important topic. Abuse of persons with disabilities, both subtle and overt, both by individuals and by society is incredibly prevalent, and also incredibly unacknowledged. I especially identified with terror and vulnerability of Kay's post.

Unfortunately, I've been very busy and didn't have a chance to write a post for this carnival. And a few people have emailed me about my blogroll - I haven't had a chance to update it in a while, but I will soon.

The next carnival will be on the topic of Disability and Identity. Head over to Crip Chick's for the details.

Carnival Time!

"A diamond is the ultimate gemstone, having few weaknesses and many strengths. Formed under pressure, the diamond is the hardest substance found in nature. There is nothing on earth that is stronger, more durable and enduring than diamonds. An uncut diamond represents the untapped potential that lies in all of us."
-Jodi Reimer

Head on over to Carnival #35, "The Hardest Part." I have been too busy with school to post, but lots of other bloggers have written great stuff on the topic of "The Hardest Part." Jodi Reimer, at Reimer Reason, has put together a wide assortment of posts on personal issues - pain, loneliness, vulnerability, lack of privacy; family expectations; health care providers; and the ever present societal issues of prejudice and discrimination. When life settles down for me, I'll be checking out the posts. I hope you'll head over, too.

A Blogswarm on the UN Convention on the Rights of Persons with Disabilities

One year ago today, the United Nations Convention on the Rights of Persons with Disabilities was opened for signatures. It had been adopted by the U.N. in December, 2006, and on March 30, 2007.

"There were 82 signatories to the Convention, 44 signatories to the Optional Protocol, and 1 ratification of the Convention. This is the highest number of signatories in history to a UN Convention on its opening day. It is the first comprehensive human rights treaty of the 21st century and is the first human rights convention to be open for signature by regional integration organizations."

The goal of the convention is a simple one - recognize persons with disabilities as people - people with rights. You can find the complete document and also answers to frequently asked questions about the convention are answered are answered at the U.N.'s Enable site. To date, 17 countries have ratified this important human rights convention.


I hope you'll head over to Ratify Now for a blogswarm. What's Ratify Now? If you read the first comment below, Andrea explains that it is an organization with worldwide membership focused on the ratification of the Convention for the Rights of Persons with Disabilities. What's a blogswarm? Head over and you won't be disappointed. You'll find information about the convention and the thoughts and perspectives on this historic convention of writers from around the world.


And the United States? We have not ratified the convention.



Check out the blogswarm!

April 2 - Edited to clarify Ratify Now.

Carnival time!

The 34th Disability Blog Carnival is up over at Andrea's Buzzing About. The theme is "Breaking Out." Lots of great links. I hope you'll check them out!

Governor-designate Paterson

On Monday, March 17, 2008, David Paterson will be sworn in as governor of New York. He will be the first legally blind governor in U.S. history.

Fifty-three year old Mr. Paterson has been blind since childhood when he had an infection in his eyes. In a New York Times article, Mr. Paterson says, "I don't act the way I did when I was 17, like I can do everything myself, because I realized the minute I do that, no one helps me. So I learned to be a little more pragmatic about life." Mr. Paterson receives his briefings via lengthy voice mail messages from his staff, and so that he doesn't need to use notes, he memorizes all his speeches. He also says that he has felt more discrimination from his blindness than from his race.

Steve Kuusisto shares his thoughts on Paterson's governship in an op-ed piece in today's New York Times.

"New Yorkers will no doubt discover that Mr. Paterson will take great interest in the details of governance and that this will require him to take sincere interest in people. He'll ask more questions than your average politician. And those who work in his administration will find that they are important not simply for knowing things but because they can describe how they learned those things in the first place. That's perhaps the most important thing for the public to understand about professionals who are blind -- we are by nature tireless in acquiring information, and we remember virtually every detail of what we read or hear."

For further interesting information - Penny Richards offers a comprehensive list of blind elected officials through history over at Disability Studies.

Carnival Day!

Head on over to Wheelie Catholic for the 33rd Disability Blog Carnival, "Appreciating Allies." As usual, lots of posts from lots of perspectives. Check it out!

Helen Keller photo discovered

Last week, the New England Historic Genealogical Society released this wonderful photograph of a young Helen Keller vacationing in Massachusetts in July, 1888. She is sitting outside on a chair and holding a doll. Her teacher, Anne Sullivan is next to her. Interestingly, "doll" was Helen's first signed word, in March of 1887. You can read the full story here - it covers some details about Helen's life and also the story behind the photograph.

Bang Long - gentle, tough, inclusive

Bang Long, Jr. died last Friday. Mr. Long was a tireless advocate for the rights of people with disabilities. According to his obituary in the Chicago Sun-Times, he was born in 1943. He had a long history of being an advocate for humanity. He had worked as a nurse’s aide in Memphis, helping people cope with tear gas during a riot that occurred while Martin Luther King Jr was in town. He was present for the signing of the Americans with Disabilities Act and was very active in disability rights in the state of Illinois.

I had the pleasure of meeting Bang Long at last year's Coalition Of Citizens with Disabilities in Illinois (CCDI) Conference. He presented me with the Markeeta Award, an annual Illinois award given to a young disability advocate. Mr. Long welcomed me to my first conference and was encouraging and kind. Many years ago, he had worked with Markeeta Vincer and her family in her pursuit for inclusion in the Chicago public schools.

Cilla at My Big Noise shares her recollections of Bang Long. They had been friends for 20 years, and she recounts his asking her to dance, and his varied activism experiences.

I only met Bang Long that one time, but he left an impression on me. He was gentle, tough, inclusive, and welcoming. I am thankful that Mr. Long requested that we take the above picture.

I am grateful to have had the opportunity to meet Mr. Long. A lesson I learn from him is that advocacy for our fellow humans is a lifelong endeavor, and comes in many different forms - disability advocacy is just one form. As fellow humans, we each other’s allies and supporters.

Rest in peace, Bang Long, Jr. Thank you.

Edited to add 2 more reflections on Bang Long: Karen Putz (aka Deaf Mom) and Valerie Brew-Parrish

Inclusive Theatre

Tonight I saw the musical Working at Dominican University. I love Studs Terkel's books, and this production was very enjoyable. What was particularly cool was that this musical was signed. One of the interpreters was an ensemble performer - she danced and signed- and the other was in the traditional American Sign Language role, a little off to the side of the stage interpreting what was spoken and sung. This is the first time I have ever been to a play or musical that was signed, and it was great to see it at my college!

There's one more performance tomorrow at 3pm. For anyone who lives in the Chicago area (Karen?), it would be a great way to spend the afternoon. Tickets are only $15. The show is about 1 1/2 hours long.

The logo above is from Working the Musical website.

Carnival Day!

The 32nd Carnival is up! Shiloh at Sunny Dreamer is hosting, with the theme, Standing Outside the Fire. Lots of links to a variety of great posts. Hope you'll head over!

Dave's Faves

A few good reads:

Another study on the employment of people with disabilities -

"In a first-of-its-kind study unveiled to Chicago-region business leaders on January 28, a team of researchers at DePaul University discussed research results that found employees with disabilities from the healthcare, retail and hospitality sectors in the region were just as dependable and productive as employees without disabilities. In addition, researchers also discussed research results that showed accommodation costs associated with workers with disabilities were often minimal and well worth the expense."

I got that link from Access Living, which also had a link to a story about Marca Bristo, being honored as a Chicagoan of the Year.

Another great read from Steve Kuusisto: How to Write Able-ist Prose.
It starts with,

"I once knew a disabled (insert "Man" "Woman" "Child" HERE)."

And, a new blog: Crimes Against People with Disabilities, It's time to speak up... Yes, indeed.

Book Meme

Connie tagged me awhile ago in the book meme, and I'm finally getting to it. Here are the rules:
Go to page 123 of the nearest book.
Find the 5th sentence. Write down the next 3 sentences.

I have a lot of books near me, and several are textbooks. Who wants to hear sentences from A Sequence for Academic Writing? So, I thought I'd pick up my fellow blogger friend, Steve Kuusisto's book, Planet of the Blind. It's Steve's memoir, and it's a great read.

"'The brave one sleeps for a time/Of course the past is with her, /Beauty
dissolved into thingness, narrow streets/Where she goes disguised.'
He pauses.
"Oh please!"

Good thing the meme doesn't ask for the next sentence, as this is a G rated blog.

Now I tag Josh Winheld, Emma, Andrea, Karen Putz, and Seahorse.

Caught in the act!

Be careful ... you never know when Dave Hingsburger might be watching!

"Oh, God, I'm going to read about this in your blog aren't I. Oh, God."

Hilarious!