“Martin’s Answer to the Ashley Treatment”

I found this new website from Ruth, at Wheelie Catholic.

Introducing, Martin.


Martin lives with his parents and 3 brothers in my homestate of Illinois. Martin's parents share their experiences raising a child with a disability similar to that of Ashley X. They share their philosophy of life, along with wonderful pictures of their family on their recently started blog.

Here’s what they say,

“Our intent is show that extreme measures are not an option. Our child's name is Martin and he has disabilities as severe, if not more so, than Ashley. Martin lives at home, is growing to a normal size and stature, and he will continue to do so without medical intervention to stunt his growth.”

Welcome to the blogworld, Martin and family! I look forward to reading more of your blog.

And, finally, thanks to Koufax-award-nominated Blue, whose Saturday Slumgullions are always on top of current events, links to two recent posts about the Ashley Treatment:
Medical Ethics Malfunction, by Reuben Apple and Protest From A Bad Cripple -The Ashley Treatment and the Making of a Pillow Angel by William Peace.

Picture from Martin's blog

John Hockenberry – “Ashley X: Straight on till mourning”

The lack of public outrage about the Ashley Treatment continues to be on my mind. And I know that the Ashley Treatment is still influencing others as well: Amanda who dedicates her video, In My Language, to “Ashley X and everyone else who’s ever been considered not thinking, not a person, not communicating, not comprehending and so on and so forth”; Wheelchair Dancer, who wants her family to “understand the world (she) lives in”; Blue who feels a renewed call to “speak (her) own truth”; Penny who has been reading about Chinese foot binding.

I greatly appreciate hearing John Hockenberry’s perspective, Ashley X: Straight on till mourning. He examines the controversy from several angles, particularly addressing the role of parents in society. It’s a must read, an articulate piece that pulls together so many points and gets right to the heart of the issues.

Here are a few excerpts:

"In a kind of grim Peter Pan story in reverse Ashley’s parents believe they have guaranteed their ability to care for their daughter as they themselves age by keeping her forever a child."

and

"It is odd to hear the many criticisms and challenges to the Ashley Treatment (a considerable number from disability activists) called ‘lofty talk about human dignity.’ It’s curious to imagine that human dignity is somehow removed from reality while the Ashley family’s lofty talk about parental love and nurturing that forms the basis for their decision to medically stunt their daughter’s growth and interrupt her biological development is, in contrast, a response to pragmatic reality."

and

"Disability has nothing to do with the morality of the Ashley Treatment."

and

"Regardless of their love and affection for their daughter their decision to remove her breasts and uterus and maintain her in a state of pre-puberty is not a parental decision. It is more the kind of control one might enforce on a pet to manage the relationship. It is something a farmer managing the productivity of his or her operation would naturally enforce on livestock. This would be done humanely, morally, and no-doubt with considerable tender affection and love for the subjects. There would be no outcry and no controversy, yet no one would confuse these acts of husbandry as parenthood."

Please go read it. It will make you think.

If you’d like to sign “A Statement of Solidarity for the Dignity of People With Disabilities - A Reaction to the Ashley Treatment”, go here.

Carnival #9

The 9th Disability Blog Carnival is up over at The 19th Floor. The theme for this carnival is employment. Mark shares lots of posts about employment and employment issues.

And if you would like some background to this important issue, Blue at The Gimp Parade shares some statistics and factual links about disability and employment. Did you know that, "The percent of people with disabilities aged 16-64 employed is 55.8%?"

More media news

This afternoon, the thoughts of two more of our bloggers can be heard.

Ruth Harrigan, Wheelie Catholic, can be heard this afternoon on the Catholic Channel (Channel 159) of Sirius radio at 5 pm EST today.

Steve Kuusisto, Planet of the Blind, will be reading excerpts from his book, Eavesdropping, on NPR's All Things Considered this afternoon.

UPDATE: Here's the link to Steve's reading. Unfortunately, Sirius requires a paid subscription to listen to Ruth's interview.

Life Lessons

If you haven’t seen this video, take a look. It was made by Amanda, author of the blog Ballastexistenz. Here’s her description of her video, In My Language,

“The first part is in my 'native language', and then the second part provides a translation, or at least an explanation. This is not a look-at-the-autie gawking freakshow as much as it is a statement about what gets considered thought, intelligence, personhood, language, and communication, and what does not.”

The video is 8 minutes long – watch the whole thing.




Amanda’s video caught the attention of CNN, and last night she was interviewed by Dr. Sanjay Gupta. (UPDATE: Here's the link to Part 1 of the interview.) More of her story will be featured again this evening on Anderson Cooper 360. (And here's Part 2)

Here are a few of Dr. Gupta’s reflections after their interview,

“She taught me a lot over the day that I spent with her."

“To an outside observer, the behaviors would seem eccentric, even bizarre. Because Amanda was able to explain them, they all of a sudden made sense.”

“It really started me wondering about autism. Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn't communicate with conventional spoken word, she is written off, discarded … Nothing could be further from the truth. As I sat with her in her apartment, I couldn't help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.”

Thank you, Amanda, for sharing so generously of yourself.

I think there are many people living outside the media-covered wealthy, “beautiful” society whose life experiences are not heard, not appreciated, not valued. What I am learning and I find intriguing is that it is very liberating to not be caught up in trying to be defined by society. Because of my cerebral palsy, I am already perceived as “different”, so I am more easily able to see that there is no obligation to conform. I have the freedom to pursue my values without the burden of conformity. I think this is a common realization among the people that I have met with disabilities and among the bloggers I read. Look at the bloggers on my blogroll. You don’t find them lamenting their inability to be live some other life, wallowing in self-pity, living the popular movie-represented life of disability. Instead, one finds ordinary people living their lives, embracing their individuality. Stephen Kuusisto recognizes this truth in his life, “I suppose I'm lucky: I don't live with the tyranny of celebrity photographs in my interior life.”

Kay Olson at the Gimp Parade, quotes Susan Wendell, author of The Rejected Body: Feminist Philosophical Reflections on Disability,

“Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, 'normal,' and sane....If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.”

When we really understand this message, we can transform our society out of conformity and into one that respects and values each and every person.

A Day at Work

I interviewed Chris and his mom, Sheila, (real names used with permission) about Chris's job. Chris is a mail clerk for Rotary International. He has had this job since 1993. He works 40 hours a week, has full healthcare benefits, and paid vacation time.

Chris describes a typical workday:

7:00 a.m. - Chris gets up, has breakfast, and puts on a white shirt and tie.
7:45 a.m. - Chris walks to the bus stop, takes bus #204 for a 15 minute ride, and then walks a few blocks to work.
8:30 a.m. - Chris signs in.
8:30 a.m. - 9:30 a.m. - Chris works in the mail center, opening mail, sorting incoming mail and interoffice mail by department, sorting the outgoing mail by cost center, and using the mail machine to seal and stamp mail.
9:30 a.m. - First mail run of the day. Pushing his mail cart, Chris takes the freight elevator to deliver mail to the departments on the 18th, 17th, 16th, 15th, and 3rd floors. After the mail run he returns to the mail center for more sorting work.
11:00 a.m. - Second mail run of the day.
12:00 p.m. - 12:30 p.m.- Chris takes his lunch break in the cafeteria.
12:30 p.m. - Back to work in the mail center.
1:30 p.m. - Third mail run of the day.
3:00 p.m. - Fourth mail run of the day.
4:00 p.m. - Last mail run of the day.
5:00 p.m. - Chris heads home on the bus.

Chris is very dedicated to his work. He is always on time and is rarely absent. His professionalism is appreciated by Rotary International. Chris has an excellent memory for names and knows almost everyone in the company. He loves his job and loves the people he works with.

Payday is every other Friday. Chris deposits most of his paycheck into his bank account, taking out a small amount for his wallet. He uses his money to buy his lunch and soda at work, take his parents out to dinner occasionally, and pay for his YMCA membership.

Chris got to where he is today with hard work on his part and a team effort with his parents, his school and his community. He got his first job at 13 years old, picking up the mail from his church, then crossing two streets and delivering the mail to the post office. Chris’s school and his mother worked together to set up many job training opportunities for him. Over the years, he worked one to three hours a day as a mail clerk at a nursing home, in food service at a school, at his local university, and in other jobs in his community. In addition to learning job skills, Chris learned how to cross streets, take public transportation, and he explored his likes and dislikes.

Since Chris had always enjoyed delivering mail, Sheila thought working at Rotary International as mail clerk might be a good match for him. In addition, Rotary was at a location that Chris could get to independently. In April of his last year of school, Chris began training to work for Rotary. His job coach from his school helped to develop the job, break it down into smaller pieces, and teach him the whole process. The job coach provided Chris with full support initially and gradually withdrew his support as Chris became more comfortable with the job. In June of 1993, Chris finished high school and started working full time for Rotary International. Coming up on his 14th anniversary, Chris is a valued member of his company.

“I’m proud of myself. I love my job,” Chris says with a smile.

Top photo from Steve Liss, other photos from Sheila

"It's downright crippling..."

Ruth, from Wheelie Catholic, shares her own story about a dehumanization experience at a Target store in an encounter with a young girl and her mother.

Costa Rica: Disability Rights Exchange Program

This week I have been working on my application to Mobility International USA’s Costa Rica Exchange. Mobility International USA is an organization that enables people to travel around the world to learn about disability rights at an international level. If I get accepted on this 16 day adventure to Costa Rica, I would be a part of a group of 12 that would travel to Costa Rica. We would learn about disability rights, stay with a host family, attend disability workshops, work on a volunteer project, and explore Costa Rica. This sounds like a wonderful opportunity for me and I'm very excited. Hopefully, I'll get accepted. I'll find out at the beginning of April.

Although I am excited about the possibility of this adventure, there's a part of me that's very nervous. This would be the first time in my life I would be away from my parents for an extended period of time. I've started the process of looking for a caregiver. I want to find just the right person to accompany me to Costa Rica.

To learn more about Mobility International USA and all their programs, visit their website.

Again: Those evil pronouns and other stories

Last weekend I was ambitious, and I posted two posts. Some of you may not have seen my first post on dehumanization.

I’ve been thinking a lot about dehumanization - particularly in the context of the Ashley Treatment and the ensuing public discussion. Dehumanization comes in many forms, and those of us deemed the "less favored humans" face it often. So, I am reposting my dehumanization post.


There was a time when I was a young child that I thought pronouns were bad words. When I would go to a restaurant, the waiter, with a quick, covert glance my way, would ask, "what would …. he-e-e like?” At the zoo, we would invariably encounter a grandma who would turn her eyes away from me and demand to know, "what's wrong with … hi-i-i-m?” On the first day of kindergarten, a mom walked up to my mom and asked, “what's … hi-i-i-s diagnosis?” The setting varied, but the indignity felt the same. I’d be having a good time, and then out of the blue - the dreaded pronoun, spoken with a slow, deliberate emphasis, preceded by a pause and accompanied by a lack of eye contact. These all too frequent experiences made me feel bad, but at the time I didn't understand why. I felt painfully dehumanized and blamed the pronoun.

Dehumanization, treating people as though not human, rears its ugly head in many different ways in the lives of people with disabilities.
It can be seen…
…when we are viewed as pitiful,
…when we are called inspirational as we face the challenges that society has set up for us,
… when people treat us like cute little pets,
…when people do not speak to us but rather to our caregivers or our friends with able bodies,
…when people are overtly cruel to us because we look, talk, or think differently,
…when people assume that because we have disabilities, we don't have any gifts or talents.

In their own words, here are three individual stories of dehumanization.

Donna said,

“When I was in 7th grade, I was supposed to be wearing a brace on my right leg to support my feet as I had no ankle movement. I was picked on so badly by one girl that I refused to wear the brace. I mistakenly thought that if I didn't wear the brace, she'd stop picking on me. Was I ever wrong. I gave her much more ammunition by not wearing it. She had a few close friends whom she managed to sway into humiliating me. They did every chance they could when there wasn't an adult in earshot. I will never forget their comments - look at her skinny legs, look at how funny she walks, she can't even pick up her own feet. They'd talk about me like I wasn't even there, or like I was deaf. And if I could hear them, I'm sure they assumed I couldn't understand what they were saying. It all came to a head one day when they were passing around "slam books" where each kid had their own page. On the first page, you would sign your name on a numbered line. Then, on that same line number on each kid's page, you would write your comments about the kid. I was one of the last ones to get the book (of course, the teachers didn't know about this) and when I got to my page, out of 20 or so comments, only 1 girl said anything positive. It was one of the most humiliating moments of my life. All of the other kids were watching me read their nasty comments about me. I finally decided I was bigger than they were, so on every page, except the girl who gave me a positive comment, I wrote "no comment" on their page. I don't remember what happened after that. I just remember feeling that I never in my life wanted to feel that way again and the only way to do that was to toughen myself against other people's comments.”

“Christine” shares an example of a more subtle type of dehumanization.

“The other day, I was in the mall with my friends and this stranger comes up and gives me a hug and he was telling me, ‘everything will be all right, honey’ . Of course, he meant very well, he just didn’t understand.

David: what did you do? How did you handle it?

I just let him do it. I mean… (laugh) then he can get away from me quickly. (I) just smiled at my friends.

David: what did your friends think?

One of my friends told me that strangers talk to me like I was a baby. She said, “How can you stand it, ‘Christine’? I just told her, ‘it’s an everyday thing. It happens a lot. I just have to know how to get out.”

Darlene, a greeting card writer, says:

“I was born with mild Cerebral Palsy 55 years ago. I love life. My husband, our son and I enjoy doing almost everything … (A)fter sharing one of the poems I’d written with a lady, her reply was ‘how does a person like you write something like that’? You might ask if I was shocked by her statement; no I wasn’t, I wish I had been. What most people do not realize is appearances are misleading, so deceiving. I might look different than you, I may even stumble some when I try to continue to walk against the odds, I may even use the wrong word here and there when I start a conversation with you in the elevator. Without a second thought sir, madam, I will give you a chance to give back what so many have taken away.”

I’ve been thinking about how to help people see that we with disabilities are a part of the diversity of humanity - that we are not different inferior, different inspirational, different weird, different to be afraid of. Rather, we are different fellow humans, each of us an individual.

For the past few years, I've spent one day each March talking with classes of high school students about disabilities. I'm not sure that that's the solution, because that has me trying to undo years worth of life’s experiences in a 50 minute "lesson". The view that people with disabilities are separate from humanity is so deeply ingrained in our culture, and a lesson just addresses what’s on the surface. There’s a need to go deeper.

So, maybe, I am wondering, the thing to address is that false core belief that diversity of ability means that some are not equal members of the human race. Maybe the way to address this ignorance is through just being present more in daily life. When on my jury duty the other day, I noticed that I was the only person with cerebral palsy in the jurors’ waiting room. I wondered what the other jurors, the sheriffs, and the lawyers thought when they saw me as a potential juror. I hope that my presence impacted someone, and I wonder if this type of experience gets inside of people more than a "lesson" on disability awareness.

Carnival #8

Head on over to Medical Humanities to check out Carnival #8 on the theme of contact. Enjoy!

What’s Shame Up To?

In a previous post, I shared a few stories of dehumanization. Unfortunately, when one is treated as less than human, shame finds a home in the soul. Shame about one’s abilities, one’s appearance, one’s worth, about being a burden.

Would you like to hear what Shame has to say? Here’s your chance. Disability Shame Speaks: ‘I am alive and doing very well.’

Congratulations, Amanda!

I heard from Blue that Amanda’s blog, Ballastexistenz was named a Yahoo pick of the week! Go check out her blog. Her perspective, reflections, and personal insights are valuable and thought-provoking.

Little Things

Sometimes little things have a big impact.

When Meredith was six years old and in a coma, the hospital nurses wanted to shave her head. Her long hair was a tangled mess, full of junk from the accident and all the tests she had had. Meredith’s mom explained to the nurses that her six-year-old daughter was going for the Guinness world record for longest hair. Meredith loved her hair; it was very important to her.

Two nurses then spent the next two nights painstakingly removing the junk, snarls, and tangles from this little girl's hair. Her head was never shaved, and when she woke up from her coma six weeks later, Meredith still had her long hair.

Meredith is extremely grateful and appreciative for the nurses’ caring efforts. She has a message for those nurses, "Thank you from the bottom of my heart.”

Recognizing the difference the little things make, Meredith now donates her hair to Locks of Love, an organization that makes human hair wigs for children who have lost their hair.

Jury Duty

Last Tuesday, I had my first jury duty. I had heard that the experience was very long and tedious with a lot of waiting around. Because of my low stamina, need for help going to the bathroom, pain with prolonged sitting, inability to handwrite, and need for help with eating, I had valid reasons to get out of serving. What's more, it's always such a hassle to have to prove myself and advocate for myself in a new setting. It was very tempting excuse myself. However, I decided to give it a try because I had heard that jury duty was a good learning experience, and I thought it would be a way for me to contribute.

My mom called the courthouse a few weeks before my service date, finding out about accessible parking and the accessibility of the courthouse in general. She was also told that I would be able to have a caregiver.

I arrived with my mom, who was my caregiver for the day, at the courthouse at 9:45 a.m. The front entrance was nicely wheelchair accessible with a gently sloping ramp and a power door. I went through security. I appreciated the respect from the guard who looked me in the eye when he spoke with me. He seemed intrigued that even though I could have been excused, I still wanted to serve as a juror. He told me a little about himself and his job in the courthouse. We had a nice conversation while we waited for my mother to get through her longer security line.

I took the elevator to the third floor and checked myself into the juror waiting room. The sheriff was unfamiliar with the rules about people with disabilities and told me to check with his supervisor. When I met the supervisor, he immediately made eye contact with my mother rather than with me. He was reluctant to have me go through the jury process; he thought I should go home. My mom and I did the subtle things we usually do to encourage him to talk with me rather than with her. The supervisor told my mom that the cases involve sex offenders, kidnappers, and murderers and can “get pretty graphic”. He also stated that, at the ruling of the Chief Judge, no caregivers were allowed in the juror waiting room (contrary to what my mom had been told on the phone). The supervisor gave me every opportunity to get out of serving, but I refused. I wanted to serve. Interestingly, when I insisted that that was my decision, the supervisor’s eye contact with me improved, and we were able to have a productive, problem solving conversation. It was decided that my mom would wait outside the waiting area door and help me with bathrooming and eating during the break. If I were to be called for a case, I would work out the arrangements with the presiding judge.

There were a few hundred jurors in the waiting room. They were diverse ethnically and ranged in age from about 20 to 75. There were no other jurors in wheelchairs; one juror had a court-supplied sign language interpreter. The staff divided us into different groups, mine was number 10. No jurors were called in the morning so I just read a book, rested, and chatted a little (mostly about the Super Bowl) with the other jurors.

There was an hour and a half break for lunch. I met up with my mom and we took care of all my needs. Immediately after lunch, 5 groups were selected, but not my group number 10. About an hour later, group number 10 was called. I was excited. I thought I would be going to jury selection for a case. However, our group was informed that the defendant in our case had chosen a bench trial instead of a jury trial and that we were excused to go home.

I think I made a good choice to serve on jury duty, even though I could have gotten excused. I am hoping that my fellow jurors and the courthouse staff took advantage of the opportunity to view me as a fellow member of the jury pool.

Lately, I have been wondering if I make an impact on dismantling the ableist assumptions of society simply by doing ordinary things. When my disability is seen as part of the diversity of society, maybe that helps change attitudes. I know I have a lot of valid reasons, such as fatigue, pain, inaccessibility, hassle and more, to discourage my participation, but perhaps by doing everyday things like serving on jury duty or going to the movies or going shopping, a deeper realization of disability as part of diversity takes place.

Those evil pronouns and other stories

There was a time when I was a young child that I thought pronouns were bad words. When I would go to a restaurant, the waiter, with a quick, covert glance my way, would ask, "what would …. he-e-e like?” At the zoo, we would invariably encounter a grandma who would turn her eyes away from me and demand to know, "what's wrong with … hi-i-i-m?” On the first day of kindergarten, a mom walked up to my mom and asked, “what's … hi-i-i-s diagnosis?” The setting varied, but the indignity felt the same. I’d be having a good time, and then out of the blue - the dreaded pronoun, spoken with a slow, deliberate emphasis, preceded by a pause and accompanied by a lack of eye contact. These all too frequent experiences made me feel bad, but at the time I didn't understand why. I felt painfully dehumanized and blamed the pronoun.

Dehumanization, treating people as though not human, rears its ugly head in many different ways in the lives of people with disabilities.
It can be seen…
…when we are viewed as pitiful,
…when we are called inspirational as we face the challenges that society has set up for us,
… when people treat us like cute little pets,
…when people do not speak to us but rather to our caregivers or our friends with able bodies,
…when people are overtly cruel to us because we look, talk, or think differently,
…when people assume that because we have disabilities, we don't have any gifts or talents.

In their own words, here are three individual stories of dehumanization.

Donna said,

“When I was in 7th grade, I was supposed to be wearing a brace on my right leg to support my feet as I had no ankle movement. I was picked on so badly by one girl that I refused to wear the brace. I mistakenly thought that if I didn't wear the brace, she'd stop picking on me. Was I ever wrong. I gave her much more ammunition by not wearing it. She had a few close friends whom she managed to sway into humiliating me. They did every chance they could when there wasn't an adult in earshot. I will never forget their comments - look at her skinny legs, look at how funny she walks, she can't even pick up her own feet. They'd talk about me like I wasn't even there, or like I was deaf. And if I could hear them, I'm sure they assumed I couldn't understand what they were saying. It all came to a head one day when they were passing around "slam books" where each kid had their own page. On the first page, you would sign your name on a numbered line. Then, on that same line number on each kid's page, you would write your comments about the kid. I was one of the last ones to get the book (of course, the teachers didn't know about this) and when I got to my page, out of 20 or so comments, only 1 girl said anything positive. It was one of the most humiliating moments of my life. All of the other kids were watching me read their nasty comments about me. I finally decided I was bigger than they were, so on every page, except the girl who gave me a positive comment, I wrote "no comment" on their page. I don't remember what happened after that. I just remember feeling that I never in my life wanted to feel that way again and the only way to do that was to toughen myself against other people's comments.”

“Christine” shares an example of a more subtle type of dehumanization.

“The other day, I was in the mall with my friends and this stranger comes up and gives me a hug and he was telling me, ‘everything will be all right, honey’ . Of course, he meant very well, he just didn’t understand.

David: what did you do? How did you handle it?

I just let him do it. I mean… (laugh) then he can get away from me quickly. (I) just smiled at my friends.

David: what did your friends think?

One of my friends told me that strangers talk to me like I was a baby. She said, “How can you stand it, ‘Christine’? I just told her, ‘it’s an everyday thing. It happens a lot. I just have to know how to get out.”

Darlene, a greeting card writer, says:

“I was born with mild Cerebral Palsy 55 years ago. I love life. My husband, our son and I enjoy doing almost everything … (A)fter sharing one of the poems I’d written with a lady, her reply was ‘how does a person like you write something like that’? You might ask if I was shocked by her statement; no I wasn’t, I wish I had been. What most people do not realize is appearances are misleading, so deceiving. I might look different than you, I may even stumble some when I try to continue to walk against the odds, I may even use the wrong word here and there when I start a conversation with you in the elevator. Without a second thought sir, madam, I will give you a chance to give back what so many have taken away.”

I’ve been thinking about how to help people see that we with disabilities are a part of the diversity of humanity - that we are not different inferior, different inspirational, different weird, different to be afraid of. Rather, we are different fellow humans, each of us an individual.

For the past few years, I've spent one day each March talking with classes of high school students about disabilities. I'm not sure that that's the solution, because that has me trying to undo years worth of life’s experiences in a 50 minute "lesson". The view that people with disabilities are separate from humanity is so deeply ingrained in our culture, and a lesson just addresses what’s on the surface. There’s a need to go deeper.

So, maybe, I am wondering, the thing to address is that false core belief that diversity of ability means that some are not equal members of the human race. Maybe the way to address this ignorance is through just being present more in daily life. When on my jury duty the other day, I noticed that I was the only person with cerebral palsy in the jurors’ waiting room. I wondered what the other jurors, the sheriffs, and the lawyers thought when they saw me as a potential juror. I hope that my presence impacted someone, and I wonder if this type of experience gets inside of people more than a "lesson" on disability awareness.

I'll Do It Myself

If you've ever had extensive therapy as a child, I think you will relate to this story. I sure do.

"Speech therapy seemed rather bizarre to me. The therapist sat on a floor mat, with me lying on my back between her outstretched legs. My legs wrapped around her waist and her stinky toes in close proximity to my nose. She then proceeded to stick her fingers in my mouth to wiggle my lips, supposedly to loosen them. She alternated between her fingers and ice cubes. Then, for the actual speaking exercise, she pushed on my chest in attempts to improve my breathing capacity. After all those years of this hefty woman pushing down on my chest, I am convinced that was why I was such a late bloomer.

The thing that puzzled me, as I laid there on my back staring at the ceiling tiles, was what was I suppose to do when I met people outside as I got older? Was I to lay down on my back, on the floor, before speaking to them? I envisioned myself sprawled out on the ground when meeting a friend at the shopping mall or grocery store. Definitely not a dignified thought. Perhaps not surprisingly, pillow talk is some of my clearest speech!
…
After the speech therapist with stinky toes, I had one for a brief time who had me sit up for the entire session. What a concept! One of the most sensible things we did was make an alphabet card, small enough to carry with me, that I could use when people didn’t understand what I was saying. I simply spelled out the word on the card. Sometimes the low-tech solution works the best. I’ve had many variations of that card through the years."

This is an excerpt from Glenda Watson Hyatt’s book, I'll Do It Myself. Glenda is from Surrey, British Columbia. She has been a vocational and career counselor and also a web accessibility designer. Glenda has wanted to write her autobiography since she was 10 years old. And she finally did it! She is now on a whirlwind virtual book tour of 40 blogs in 40 days.

I asked Glenda about her writing and her life.

1. Why did you write your book? What do you hope people will take away from it?

I wrote my autobiography I’ll Do It Myself as part of my legacy, as my way of passing on the lessons I’ve learned in hopes of making someone else’s life easier, as my way of showing that having cerebral palsy is not a death sentence, but rather a life sentence.

First, and foremost, I wrote I’ll Do It Myself for youth and young adults with cerebral palsy and other disabilities to motivate, to inspire and to share how I have navigated life. Sometimes simply reading how someone else handled a particular situation gives the reader the encouragement and ideas for handling a similar situation. Other times knowing others have had similar experiences – to know one is not alone – can be so comforting, and can offer strength and hope.

Secondly, I also wrote the book for parents, who, after having their bundle of joy gently placed in their awaiting arms, are given the devastating news their baby has cerebral palsy. In an instant, their hopes and dreams for their child, as well as for their family, are smashed. I hope this book offers a glimmer of hope for these parents, as well as for the siblings, grandparents, aunts and uncles. I want to show that life can still be meaningful, despite cerebral palsy. I hope the book offers parents insights and ideas when raising a child with cp; however, realizing that no two children with cp are the same, there is no guarantee these ideas will be appropriate for every child.

2. In his memoir, Planet of the Blind, Steve Kuusisto talks about learning to “walk upright” –accepting his disability while recognizing that he is not defined by it and living a full life. Do you have any transformational experiences that you can share?

Due to my cerebral palsy I have a significant speech impairment; I speak Glenda-ish, which few people take the time to understand. Medical experts have labeled me as “functionally non-verbal” – a label that my husband vehemently disagrees with.

A couple of years ago I was asked to give a brief speech. Because of my speech, my initial reaction was “No, I can’t.” But, being raised without the word can’t allowed in my vocabulary, that was a fleeing thought. My mind then turned to how can I do this.

Using a text-to-speech software loaded onto my laptop, I was able to give my first ever speech. It was amazing! At a later event, using my synthesized voice on my laptop and my pre-canned comments, I actually put up my hand to say something for the first time in my life!

Now, with similar text-to-mp3 technology, now I can even podcast! This non-verbal red-head is podcasting! I feel like a butterfly, emerging from my cocoon of silence. I can now reach people in a new way, and who knows what opportunities will arise now that I can podcast!

I no longer consider myself non-verbal; instead, I have a significant speech impairment. This has been an empowering experience as I try on words that better describe and define me, rather than being burden with labels imposed upon me by medical professionals or strangers. It will continue to be a journey, a process, as I transition from being non-verbal to speech impaired. This will likely mean taking steps, even baby steps, as I take on this new role.

3. What advice do you have for someone like me, a young person with a disability planning his future?

David, I would say hold on to your dreams. You will, no doubt, have parents, instructors, employment counsellors, vocational rehab workers and countless others offering advice on what you should do with your life; some may even strongly encourage you to go in a particular direction. Openly listen to their advice, even explore the various options suggested. But, in the end, it is your life, your choice. Pay attention to your interests, your values, your passions, your dreams. Choose what feels right to you (with a dose of reality) and then go for it. The future is yours!

4. What’s next for you?

Since my book I’ll Do It Myself began as a dream when I was ten and has taken me thirty years to get to this point, I’m going to do all I can to promote it. Next quarter, I’m planning to do a Flash movie using childhood photos to put up on YouTube, to do some video viral marketing. First I need to learn enough Flash to be able to put my idea into action. I’m also planning to develop an e-course “Accessibility in Action”. Over the years, I have found that people have fears when interacting with those with disabilities because they simply don’t know what to do and they are too embarrassed to ask. I want to address those fears by providing practical information and a safe place to ask questions. The e-course would include topics like what language to use when referring to people with disabilities, tips for when communicating with people with disabilities, ideas for when choosing a gift for a relative/friend/colleague with a disability, suggestions for how to include a classmate with a disability at your child’s birthday party, and many other topics. My goal is to include hands-on and practical information that people can use in everyday life. Meanwhile, I will wait for the seed of my next big dream to be planted. Perhaps it will be a movie based upon I’ll Do It Myself!

You can learn more about Glenda and join her for the rest of the virtual book tour here. If you'd like, you can sign up there to receive blog updates, or to order a copy of her book.

Glenda, thank you so much for taking the time to share some of your thoughts. Best of luck on your book tour.