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.”

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.

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.

For parents: my cerebral palsy

I have decided to share a little about my cerebral palsy because I see that parents of young children with CP have so many questions. I had been reluctant to share too much personal information, because I don't want it to detract from what's really important - namely, that people are people, disability is part of human diversity, and that I think loving your child is the most important thing you can do as a parent. Working to reduce the societal barriers to inclusion and respect comes second. I know that the parents whose blogs I check out now and then get that. So, this is for you parents. I hope it helps in some way.

To start - my childhood was a happy one. The fact that kids with disabilities have happy childhoods should not be a surprise, but to some it may be. Here's a study confirming that point.

I have spastic and athetoid quadriplegic cerebral palsy. Over the years, I have met many other people with CP, and one thing is for sure - cerebral palsy is different in each one of us. I have high tone and spasms in my legs and arms, and low tone in my trunk and neck, and athetosis in my arms and hands.

With CP, life is full of complicated decisions. I've learned that every decision has a positive and negative. Every choice has a positive consequence and a negative consequence. Sometimes the consequences are short term, sometimes they are long term. And, often, when making a choice, you just don't know what the consequences will turn out to be. As I now weigh decisions on my class schedule, exercises, rest, and fun activities that challenge me physically, I understand more how difficult it was for my parents to make decisions for me when I was younger.

Therapies:
As a child I had physical therapy, occupational therapy, and speech therapy. Mainly, I have had a lot of physical therapy. My physical therapists worked out of Children's Memorial Hospital (and are now at La Rabida Hospital). Their philosophy entails an emphasis on prone work to strengthen core and trunk muscles. I still do physical therapy, and I am still making progress. Yes, you heard that right - at 22 years of age, I am continuing to make progress. While I have worked many hours with professionals, my parents were the key people. A great deal of work was done outside of “therapy time” – work with my parents and also on my own. When I was younger, my parents had exercises and stretches that they did with me as part of a routine - like each time they changed my diaper they would stretch my hips and hamstrings. The biggest part of my work was spending huge amounts of time prone (lying on my stomach). "Prone lifts" - reaching for toys, playing with blocks, pointing to pictures in books, lying prone in my stroller were just a normal part of my day. When I was younger, I spent a great deal of time on my stomach, and had sitting time and standing time as much smaller parts of the day. I played prone with my cars and trucks and played prone in the swimming pool; it was just part of my life. For a time, I even went to school prone. When I played while lying prone, I didn't know I was strengthening my back and trunk muscles and gaining head control. At my house, it's just how we did things. I never had walkers or gait trainers because my therapists felt that I would use my tone to operate those things and that would limit my abilities more than help them. My parents carried me around a lot, brought things over to me, and I explored the world on my stomach. I did have a stander when I was younger.

Today, I’m most comfortable lying on the carpet where I can roll from my back to my stomach and change position on my own. And now, I take time throughout my day to do prone lifts on my own. While I do not like doing the lifts, I notice that when I take time off from them, my trunk and gluteal muscles get much weaker, and I have more trouble sitting and standing and also more pain in my back and legs. When I return to doing the lifts, my muscles get stronger again.

I wish I didn’t have to do so much bodywork – I think my parents and therapists were smart to mesh as much of it as possible into our daily life. But, I really got sick of the formal therapy work. I hated (and still don't like) the time it takes in my life, but the benefits of working on my body are so great. I used to think that I was going to walk - therapists and doctors told me that it was possible. But, it didn't happen. I've realized though that the primary benefit of taking care of my body is not about walking. Walking isn't that important. The real benefits are in helping my body do the best it can for me. With a stronger body and less pain, I can travel (like family vacations here and here and my trip with MIUSA to Costa Rica); go to college; sing; blog; and just do more and have more fun. Without the work, my hips and back would be pulled out of alignment by my spasticity, and that hurts. In the long run, doing therapy takes less time and is less hassle than the alternatives of pain, decreased function, and multiple surgeries. Because of my work, I have good head control and I can sit in my wheelchair for several hours at a time. Those two things are really important to my functioning. Also, because of my work, I can do a standing transfer with the assistance of one (knowledgeable) assistant. This is really important, because without a standing transfer, I would have to be lifted from one place to another - say on and off the toilet. My mother is no longer able to lift me, and without a mechanical lift, my options to go places would be very limited without a standing transfer. Now, my mother (or someone else who is trained) can help me transfer. While I'd rather be totally independent, this assisted transfer is extremely helpful to my daily life. I know that without all my work, I would not be able to do that.

AFOs/Casts/ splints
AFO’s – I have had AFO’s all my life. If made properly (and that usually takes quite a few annoying, time consuming adjustments), I don’t find them uncomfortable. I think it was harder when I was growing than it is now. I do find that the AFO’s get very cold, so I like to have a warmer pad inside the AFO on cold days. (Cold feet increase my spasms.)

For most of my life, I slept in a night body cast for several hours each night. This kept my trunk straight, my hips intact, and my legs abducted (apart). As a young child, I didn’t mind it; as an older child and teen, I hated it because it was very uncomfortable to sleep in that position since my spasticity was so great while I was growing. I could have tolerated it when awake, but sleeping was another story. But, it met the important physical goals that it was designed for; my scoliosis is minimal and my hip sockets are well formed. I have mixed feelings about using the cast.

Splints – I do have a splint that keeps my legs separated that I sometimes use during the day now. I don’t mind using that splint, and I feel the benefit of not having my legs cross.

Botox:
I had botox on my hamstrings, and for me, it didn’t help at all.

Serial casting:
I had serial casting twice. The first time was when I was about 8, and it was successful in lengthening my Achilles Tendon. The casts didn’t hurt; it was just annoying to wear them and to have weekly appointments for months on end.
The second time I had serial casting, I was 16 years old and I had been having pain in my feet with standing. This time the casts helped a bit, but they hurt a lot. My bones had shifted over the years, and casting could only address the muscle and tendon issues. After the casting, I had bone surgery on both feet.

Surgeries:
My experience with surgery (my own and my friends) is that it’s ALWAYS harder than what the surgeon says. Based on my personal experience and that of my friends and acquaintances, I would work and do work very hard to avoid a bone surgery.

I had muscle lengthening surgery when I was 6 years old on my adductor muscles. (These muscles were tight from all the tone pulling my legs into crossing.) Physically, this surgery wasn’t that tough, but I did an intensive physical therapy program afterwards to help me retrain how I used my legs. It all felt time consuming to me, but I know it was very helpful. I made a great deal of progress being able to stand without crossing my legs.

I had my second surgery when I was 16 years old. As I said, my feet were hurting and it was getting hard to put weight on them. This was a major event – rearranging the bones of my feet. It was extremely difficult with long-term pain and an increase in horrible back and leg spasms. I would say it was about a year before the painful spasms of my legs and back reduced back to the pre-surgery level. I went to a pain management clinic for help with the pain, and that was helpful.

Now, I see a major, major benefit of bodywork as avoiding bone surgery – it is so painful, affects the whole body, and takes so much time out of your life. It's mentally very exhausting. (I recall some school aged kids with CP having a major surgery every summer. Yuk!) I would do a lot of bodywork to avoid bone surgery! I've also learned that surgery only straightens out the bone, it doesn't change the CP. So, after the surgery, the CP is still causing the problem that led you to the surgery in the first place.

Also, I wore an eye patch for several months and had 2 surgeries for strabismus (eye muscles).

Respiratory
I had lots of respiratory infections as a baby and young child. They were very debilitating. This changed after about age 7 – I worked with Mary Massery on respiratory exercises. She taught me to take a deep breath, hold it, and then cough. My parents also learned some respiratory physical therapy techniques that were helpful in preventing a cold from turning into a full blown respiratory illness. I also started singing in a choir about that time. My respiratory problems dramatically decreased as my diaphragm got stronger. Now, I still sing, and I know that that is really helpful to my body. Plus, unlike other bodywork, it's fun!

GI
CP affects my GI tract big time. I’ve had trouble with weight gain, severe reflux and vomiting, and constipation. There have been no “magic pills” to solve these problems, but with some effort they are managed to the point of being livable. The severe reflux is one problem I’d really like to get rid of.

Stamina issues
I tire very easily, both mentally and physically. Sitting well, standing well take a lot of cognitive work. My low stamina is a big frustration for me. I need a lot of rest each day. If I don't get it, I really pay the price with increased pain and tightness.

Tone/Spasticity
For me, the high tone itself is somewhat painful. It's more limiting than painful, because I can't move so well and I don't feel like I have good control over my body when it's tight. The effect of the spasticity on my hips and back can be painful - the constant pull (to cross my legs) on my hip can be painful in my hip. I've found heat to be very helpful in reducing both the spasticity and the discomfort. I like to keep my legs warm. I use little heating inserts in my AFOs, and when I am lying prone, I often have a heating pad across my butt or legs. A warm bath also relaxes the tightness. Being cold and shivering increases the tightness. Positioning my legs in a way that separates them while simultaneously applying heat helps. Also, actively using the spasming muscles helps to decrease the spasms; if I stand well and actively use my gluteal and leg muscles, the spasms decrease. But, that's hard - it takes a lot of cognitive work to get it right.

A problem with pain that can be overlooked is that pain, even mild pain, is distracting. It takes my attention away from focusing fully on something else. And that is sometimes a problem, more so than the actual discomfort of the pain.

Technology
Technology is so very important for kids with cerebral palsy. I cannot handwrite at all, but I can use my computer to send emails, write papers, etc. My Permobil wheelchair lets me change my position on my own - sitting, standing and lying down. Without the Permobil chair, I'd have pressure sores, a lot more pain, and much less function.

School
This is a big issue. I've written a little about my school experiences here and here. Between my sisters and me, we've tried full-time public school, part-time public school, full and part-time private school, and homeschooling. We did different things at different times. My parents came to view the school system as one tool of many in their toolbox. They learned that it wasn't always in my best interest to do things a certain way, just because things had always been done that way. I've found the low expectations and the challenges of finding capable assistants to be the biggest hurdles in the school system. Interestingly, and wonderfully, I am finding college easier to navigate than k - 12.
I think that it is extremely important to not have one's time filled with bodywork and schoolwork and no time for fun. That's part of the tricky balancing act that families have to figure out.

Pursuing strengths
I see it as so very important for kids with CP to pursue their strengths. It is very easy to focus on everything that needs improvement. But, for me, my strengths are what helped me fit in with other kids, what gave me confidence, what gave me fun, and what now may help me to be employed or have fun as an adult. I am so glad that my parents helped me to have singing lessons and choir experiences. I am glad I didn't focus on handwriting in elementary school. It was a good decision to take higher level Spanish classes in highschool and skip some math classes; my strengths are auditory and my learning disability is visual.

Parents/Making decisions
There are things I wish my parents had done differently. For example, I wish I had homeschooled more in elementary school. I think it would have been less stressful to me, and more efficient for my time. I think school took up too much of my time, particularly when the way things were done didn't match my learning needs and simply wasted my energy. I wish my parents had intervened sooner with one of my problem school aides. And, I wonder how life would have been with less therapy time. There were plenty of times that I hated going to therapy.

I am very grateful that my parents were able to go against the culture or the "way things were always done". I am so glad they were strong advocates for me. They tell me that they learned that over time. They didn't start out that way.

I also now appreciate how very difficult decisions for me really were. As I have taken over more and more responsibility for these decisions, I realize that there are not easy answers. My parents did the best they could. And, I have learned from them to not dwell on the mistakes or the things I wish I had done differently, but to keep learning and move on. I think if my parents were wracked with guilt and fear about making mistakes, I'd pick up that attitude also. And that attitude could paralyze future decision making.

This post was a joint effort with my mom. I hope it is helpful to parents. Again, these are my personal experiences; everybody is different. Let me know if you have any other questions.

So, my summary points - love your child, promote strengths, do the best you can with the complicated decisions, think "outside the box", and don't be too hard on yourself.

It's very important that we all work to change society so that those of us with cerebral palsy can be full members. Support the ADA Restoration Act, model inclusive attitudes and advocate for a better world.

UPDATE: My parents and I continue to think of many other things that could be helpful to a family with a young child. Here are a couple more.
-During the years when I rebelled against formal therapy, (in addition to meshing the work into my day like I described above), my parents tried to make therapy fun. I had books read to me or played guessing games or various things to help me "enjoy" the time more. It didn't really work, but it did help. Also, when I was about 4 years old, something that worked was a "reward" for "working hard" in therapy. I got to do an art project that was only done after a session during which I cooperated (so the reward was not based on "what" I did, but just that I gave a reasonable effort). My mom had a stash of paper plates that I decorated with glitter, paint, felt, whatever, and then she put them on display on the wall. Whenever someone came over, they would ask (with some prompting by my parents) about all the art on the wall. I would feel proud of my accomplishments. My parents never wanted to punish me for not cooperating with something that was inherently unpleasant, so they just used rewards or lack of rewards. And, I did get a time out if I would bite the therapist or do something really nasty. ; ) No art project on those days!
But, I do think the best way to work on my body was just having it be part of my day.
-Also, my parents came to learn that no "expert", in health care or education, was more expert than they were. They used "experts" like consultants, weighing what they would say against their own experience with me and against their gut feel. (And, by the way, they didn't get the hang of this until after they were misled a few times.) They also learned to be very creative as they weighed different choices, starting with what their goals were for me and then deciding how to use others' advice.

Questions about cerebral palsy

I have been working on a post about my cerebral palsy. I haven't written so much about that topic because I had originally intended my blog to be about my interviews with people with disabilities and the societal issues of disability.

But, after reading Kathryn's recent post, and Billie's blog and Jacqui's blog and others, I think that maybe some information about how CP is for me could be helpful.

So, parents of young children with cerebral palsy, do you have a question you'd like me (or maybe my mom) to address about my CP now or when I was younger? If so, leave a comment here.

22!

Twenty two years ago (tomorrow) I was born. Here's a picture of me and my sisters at 24 days old on Christmas day, 1985. Can you guess which one is me? (a little take-off from Kay's guessing game post).



If that was too hard, here's a picture from 7 months later where clothing gives a clue:

(Hmm...why did my parents save this particular photo?)

PS - No guessing, sisters! Happy birthday to you, too!

Understanding the less common perspective: A Thanksgiving reflection

This semester in my English course, my classmates and I were asked to write an essay about education. I decided to write about my childhood educational experiences because I thought they needed to be heard. When my English teacher and my classmates read my rough drafts, they did not readily grasp the main points that I was making and they totally missed some of the subtler points. Granted, they were unpolished drafts, but the reality was that my childhood educational experience may have taken place on another planet for all that they could relate to it. I ended up making many changes to the paper, changing words and fleshing out concepts so that my classmates could better understand the school experiences that I and many other children with disabilities had. To focus on a more basic message I ended up leaving out some of the complexities, for example: juggling health needs and school; countercultural decisions that my parents and I made in an attempt to counter the mainstream paradigm; and my atypical high school choices.

My experience with this essay left me thinking. How do you best convey experiences of living with a disability that are so alien to so many people? Where do you start? How do you convey challenges that people have never even considered? (Kay and Ruth recently shared recent experiences that most people couldn’t even fathom.) How can people relate to you and support you when they are so unfamiliar with your experience? I realized after I wrote my paper how grateful I am to have the support of the blogging community, many of whom share personally their own journeys through different, unfamiliar, and exotic lands. I'm so grateful that I have people that know what I'm talking about and are not surprised when I bring up certain issues in my life. Psychologically, it's really helpful to realize that there are, in fact, a large number of people who have atypical life experiences and that we can and do support and encourage each other. This experience of trying to convey my world to people who could not easily envision it led me to an even greater appreciation for Amanda Baggs and her tireless efforts to share her perspective in a society that lives under such a different paradigm.

So on this Thanksgiving, I thank you fellow bloggers. I thank you for all you've taught me and all you've done to support me. I thank you for listening to my perspective and enriching me with yours. And I thank you readers for making the effort to understand my perspective.

Here’s the final version of my English essay:

“We hold these truths to be self evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights, that among these rights are Life, Liberty, and the pursuit of Happiness.” Familiar words to all Americans; and within these words, most Americans see the value of education, believing that public education is a key component of the individual pursuit of “Happiness”, a full and rewarding life. And likely, most of us agree with Thomas Jefferson’s 1806 assertion in his 6th Annual Message that the country as well as the individual is improved when its citizens are educated, that the benefit of education is not just to the individual, but also to the entire society, which is strengthened and enriched by educated members.

One group of Americans left out of this fundamental right is children with medical conditions or learning differences. The current educational system is designed for the student who can sit at a desk for several hours at a time; learn visually from the written word; follow directions quickly, easily, and compliantly; and conform and cooperate with the demands of a system based on multiple choice testing as the means of assessing progress. The American educational system is a one-size-fits-all structure that doesn’t fit the large number of students that are unable conform to it.

So what happens to these children who don’t fit the system? The children who can’t sit still, the children who learn best from hearing rather than seeing? The children who have difficulty understanding directions? The children who can’t write for themselves? The children who learn best with movement and physical stimulation? The children who are slower or faster in learning a skill than their same-aged peers?

These children are disrespected and left along the wayside. They are labeled - “different”, “uncooperative”, “special”, “hyperactive”, “slow”, to name a few. Expectations for these children are lowered, dramatically lowered. In our society, there are two ways of educating children with learning differences: in a classroom exclusively for children with disabilities or within a classroom with same-aged peers. Because of the pervasive disrespect and low expectations for these children, neither setting is designed for success. Often the curriculum is weak, the support non-existent or poor, the staff undertrained, and the resulting social isolation is vast.

Having cerebral palsy, I was one of the children labeled “different”. I have traveled through a dark side of public education that may surprise, and would hopefully appall, many Americans. Over the last year, I have interviewed young adults with disabilities from many school systems who have shared similar dark educational journeys.

Ironically, my very first school experience was an ideal experience, a model for the education of young children. My parents had refused to let me, as a 3 year old preschooler, travel 1 ½ hours each way by bus to be isolated in a building that only had students with physical weaknesses like mine. They recognized that while my physical abilities were quite limited, my language skills, love of music, interest in books, and desire to learn were age appropriate. Luckily, a local preschool teacher invited me into her classroom for the second half of the schoolyear, while a neighbor physically lifted me and supported my full participation. Not until much later would my parents and I realize that this ideal educational experience based on high expectations, respect for me and my learning style, and full membership amongst my peers was a fortuitous rarity that would not be easily replicated in my grade school years.

In grade school, my parents pushed for me to be in a classroom with my same-aged peers, but like other children with disabilities in the regular classroom, it was a forced fit. The biggest hurdle that I faced every single day was the hurdle of low expectations. Many staff took one look at me and made assumptions that I couldn’t learn, that it would be a chore to teach me, that it didn’t really matter if I learned, and that I was not now nor ever going to be a contributing member of the classroom or society. I felt these low expectations when teachers didn’t expect me to have an answer and would not call on me in class, when an inaccessible location was chosen for a field trip and it was okay if I didn’t go, when it was acceptable that my schoolbook audiotapes were not available at the start of a unit, and when my large print copies were not ready on time.

My stories are echoed in the stories of the people I have interviewed. Whether in a disability classroom or a same-aged classroom, each person experienced the trauma of low expectations. Students in disability classrooms noted that academics were not considered a priority, that they did not have homework, and that their schoolday was full of wasted time. Students in the same-aged classroom recall the discomfort of the forced fit into that classroom – the medications to allow them to sit still, the assumptions that they were faking their need for extended time or personalized directions, having to learn math with worksheets rather than by handling concrete objects. A woman who is blind recounted the terror of never knowing when she would be hit by a basketball in gym class. (The sound of a basketball still makes her cringe some 20 years later.) Whatever their classroom, most can still replicate the baby-talk voices of staff members. Students who took the “special bus” recalled that no educator seemed to care that each day they would miss academic instruction due to a late arrival and early dismissal designed to make the bus driver’s schedule easier.

For many, a seismic manifestation of the disservice of low expectations came in the form of teachers’ assistants. Assistants to support students with disabilities in the classroom sounds, in theory, like a good idea. Reality often shows otherwise. Using a wheelchair, being unable to handwrite, and being a weak visual learner, I was assigned an assistant to support me throughout grade school. More often than not, this was a person who had no more than a high school education and was in this very low paying job temporarily until a better job came along. Typically, my assistant had little to no understanding of child development and placed no value on his or her own education. Yet, these people were placed in charge of my day-to-day learning, while the classroom teachers looked after the needs of the other 25 students. I had a few positive assistant experiences, but many more negative ones, including an assistant who was absent 50% of the time; an assistant who wrote “Abe” rather than “Abraham” in my dictated story about President Lincoln because she could not spell “Abraham” and did not think of using a dictionary or asking the teacher; an assistant who would take me with her while she socialized with the janitors; several assistants who did not know school policies or equipment; an assistant who forgot to put my seatbelt on, then tried to push my wheelchair forward down the stairs (fortunately stopped by the scream of my observing mother); assistants who brought their own troubles and stress to the workplace and my day; and an assistant who swore at me and abandoned me in the bathroom because he didn’t like my attitude.

Like me, others interviewed told of low expectations manifest through the revolving door of incapable and, occasionally, even abusive, assistants. A number of people recalled that recess was nothing more than a time for assistants to gather, students at their side, for a chatting break while all the other kids played. Former students spoke of the high absenteeism rate for assistants, and of assistants who yelled at and scolded them. One man shared that an assistant kissed him in the seclusion of an elevator.

When so many actions of the educational system send the message that you have little potential, it’s hard for a child not to internalize and fulfill those low expectations. The public educational system wreaks havoc on the feelings of self-worth of the child with a disability. Every person that I have interviewed speaks of childhood memories of intense isolation, deep rooted feelings of inferiority, and an assault on their self-esteem. For many, the scars take years to eradicate, and can resurface when confronted by constructive criticism, snide comments, a rude look, or any challenging situation. Changing from a “you can’t do that” mentality to an adult “I can do that” attitude requires great effort.

Children model adult behavior, and the plague of low expectations spreads to little ones without disabilities as well. These children have been exposed day after to day to a system that treats a group of their peers as inferior, and they naturally come to accept that perspective. In addition, if there is segregation of the two groups of students within the school, there is limited opportunity to get to know each other and break down the stereotypes. Children could have the opportunity to form friendships in extracurricular activities, but sadly this doesn’t happen very often. Children with disabilities are only able to partake in activities with leaders willing to accommodate their differences, which are not necessarily activities for which they have a natural affinity or a genuine interest.

Consequently, many children with disabilities never experience solid friendships with their able-bodied peers. By the teenage years, many schools aggravate this problem by setting up well-intentioned service opportunities for their able bodied students, pairing them with students with disabilities for social activities. What I have seen repeatedly is that the able-bodied student sees a short term charitable project, albeit a fun one, while the student with a disability, lacking experience with relationships, believes he or she has formed a real, lasting friendship. This disconnect often is never fully realized by either side, and down the road leads to confusion, hurt feelings, and sometimes hostility, exacerbating the divide between the two groups.

It can be seen, then, that the child with a disability loses out on academic instruction and therefore academic potential, self-esteem, and relationships. But, others suffer too. Able-bodied children lose the opportunity to be exposed to peers who have a different perspective on some life issues, and society loses the opportunity to fully experience the talents and contributions of this suppressed group of people.

The current system, defined by low expectations for students with disabilities doesn’t work. What is needed is an educational system that accepts all aspects of diversity, including diversity of ability. What is needed is a school system that truly respects each individual child and supports all children to become full members of a diverse society that benefits from the full education of each of its members. There is not some precise line dividing the ability from disability. Every child, and for that matter every person, has abilities along a continuum. In addition, each child has individual strengths and weaknesses. Priorities should be set so that not only can weaknesses be improved, but strengths, interests, and passions can flourish.

Class sizes need to be smaller, so that teachers can get to know each student and his or her unique needs. Lessons should be offered in many formats – visual, auditory, kinesthetic, creative role playing, tactile, and experiential. Each format needs to be considered to be of equal merit, deserving of high quality materials that are ready in a timely fashion. The ideal classroom would be reflective of the ideal society, having diversity represented among the staff as well as the children. Diversity of ability should be prized in teachers, as enriching the educational process and society. A teacher with a kinesthetic learning style, one who might have been labeled as uncooperative and wiggly in first grade, would be a valued member of a team with teachers of other learning styles.

This truly respectful environment would foster self-worth, confidence, and a joy and love of learning. In a school with respect for individuality and diversity of ability, natural peer relationships and friendships would develop without the barriers of artificial superiority or inferiority. Children would grow up to offer their self-confidence and varying talents to create a just, diverse society enriched as Jefferson imagined through the foundation of a strong public education system.

Milemarker Mania

I like to travel. I’ve talked on this blog about my Wisconsin summer vacation, my Costa Rica adventure, and my Yellowstone vacation. When I was 10 years old, my family took a 2 week car trip around Lake Michigan. The vacation was a combination of driving, sightseeing, visiting cousins, swimming, biking, hiking, and just hanging out together.

On our drive, we stopped at picturesque lighthouses along both Lake Michigan and Lake Superior. As a passenger in the car, I watched lush, green forests go by my window, and for the first time, noticed milemarkers along the highways. I learned that these posts tell you how far you are along your road and, if you do the math, how much further you have to travel to get to your destination.

One often hears that life is a journey, and that the goal is not to race to the “finish line”, but rather to embrace the whole trip. Yet, when you are a child growing up with a disability, many people, particularly educators and health care providers, focus solely on your milemarkers, as though the milemarkers and the journey are one and the same. Gross motor skills, fine motor skills, speech and language abilities, cognitive skills, academic level, activities of daily living skills, social skills and on and on - it is easy to become consumed with measuring progress against these markers, and take them on as though they were life itself.

My parents carefully planned the routes we would take for our Lake Michigan adventure; we traveled through northwest Indiana and southern Michigan, spent a few days visiting Sleeping Bear Dunes and Traverse City, took a bike trip around Mackinac Island, drove along chilly Lake Superior, and then traveled home through the farmlands of Wisconsin. My parents planned the daily mileage, the finances, the fun, the food, and the sights we would see. They also left room for potential adjustments in the itinerary, and adjustments did take place when we were having a particularly fun time somewhere or when a road was closed due to construction.

The same careful planning is important for my life – defining my priorities and what will make my life full and fulfilling, and then considering how to reach these priorities. I also have to be open for the unexpected pleasures and necessary detours along the way. For example, when I started my interview project, I never expected to have so much fun blogging, to "meet" so many interesting people through the blog carnivals, to learn from the experiences of others and to feel a part of an internet community; I very much appreciate this unique side trip.

Like the time I waited in a long line for a piece of famous Mackinaw Island fudge, sometimes short term sacrifices are necessary to achieve a long term benefit. For example, I do a lot of physical therapy – not how I’d like to spend several hours a week. The reward is not the range of motion of my hips or the fact that I can get good chest and diaphragm expansion. Those are merely milemarkers. What is meaningful is being able to have fun singing, having the breath support to be able to speak understandably, and getting fewer respiratory infections. Sometimes my motivation to endure physical therapy is to avoid a major hip or back surgery, just as when a driver chooses an unpleasant bumpy backroad detour to avoid a bridge that is out.

Milemarkers just give a number, a neutral number. They don’t tell you if you are on the road to New York or the road to California and they won’t inform you to what road is best for you. So, before looking at the milemarkers, thinking carefully about where each road leads is wise. Which of the many possible roads, should one choose? Sometimes, multiple roads can be taken at the same time, while other times that is just not practical, and choices need to be made.

Milemarkers are wooden or concrete posts stuck in the ground, and they give limited, lifeless information. My trip around Lake Michigan was not merely driving from one milemarker to the next – what a drag that would have been! I would have missed so much of Lake Michigan, so many fun times with my family. Nor should life be merely a rote, absent-minded journey from one milemarker to the next, with no thought of the road, the destination, or the beauty of the present.

Going to college: high-tech, low-tech, mom-tech

This week I started college at Dominican University in River Forest, Illinois. I'm excited and looking forward to a challenging (in the good sense!) and rewarding experience.

It's taken me a couple months to address my unique needs for college. I know from other experiences that planning makes a big difference. But, I also know that even with the best planning, unpleasant surprises and delays occur.

I have a few new things to help meet my various needs - some high-tech, some low-tech, and some designed with the tools of improvisation (like velcro, duct tape, items intended for other use) with which every person with a disability becomes all too familiar. Like other times in my life, many adaptations were designed by a creative genius, a.k.a. my mother, because there was no product that exactly worked for me.

Improvisation is a key aspect of living with a disability. Many times there are no products available to meet the individual’s specific purpose. You have to use your imagination and be creative. In the basement, my family has a box filled with Velcro, extra padding, spare parts, and a ready supply of duct tape.





The staff from the University of Illinois Assistive Technology Unit, who I started meeting with last March, designed and installed a small flip-out tray for my Kensington Trackball. They designed it so that I can store the little tray under my wheelchair tray, and independently move it into place when needed. They also designed my armrest to flip open to give my wrist added support while using the trackball. Now I can use my laptop computer while in my wheelchair! At this time, though, I still prefer to lie on the floor and use the computer, including my Dragon software, because then I can have all my papers on the floor to look at and sort through. And, I can roll around and change position as needed; my back doesn't get quite as sore.



I needed to get a cell phone for school. My parents spent a lot of time checking out the possibilities. Unfortunately, the UIC AT people didn't have advice on particular phones. Access World had an article on cell phones, and Planet Mobility had information on a 100% voice activated phone. Also, Jitterbug makes an easy to use cell phone. None of those exactly met my needs. We went to the Verizon store and picked a phone that seems like a good match for me - the GzOne phone. It's a rugged phone, made to stand up to shock (i.e. accidental dropping) and also water resistant. The buttons were not too hard to operate, and we programmed the numbers I'd use the most into speed dialing, so that I can call them with the press of one button. I decided against a Bluetooth headset because I am not able to get the headset on and off by myself. I also was not able to flip the phone open in its original form. We put the phone in a holster, and taped an old caribiner hook on the back. Now I had something I could grip with my left hand. Then my mom threaded a string through two washers and taped it all to the top of the phone. With my right hand, I can grab the string and flip open the phone.

My mom found two different baby stroller cup holders and set up one for my water bottle. The other one she rigged up to be attached to the first one and to hold my cell phone. She also attached a strap to the phone to make it easier to pull out of its cup holder.

I also bought the Day Cruiser bag from Wheelchair Gear, which is attached to the left side of my chair. With practice, I am getting the hang of opening the velcro flap and getting into the bag. We may have to remove the velcro. We attached a key chain holder to the zipper compartment with the hope that I can get the hang of using that compartment also.


I have also worked with the university to address my needs. This semester, I’m only taking two classes to make it easier to juggle academics, learn the ins and outs of addressing my needs, do physical therapy, and, of course, have time for fun stuff.

I emailed my professors over the summer to explain some of my needs. I ordered audio version of my textbooks from RFB&D and my local branch of the National Library Service for the Blind. And, I just got a subscription with Bookshare. (Even with all that planning, I still don't have all my books in an audio format!)

After the first day of class, I met with my professors to talk about what I needed to succeed in their classes. I was pleased that they were both receptive, and the meetings went well.

Each professor is helping me to find a classmate to be my notetaker. The classmate will make a copy of his or her notes for meand get paid $9 dollars an hour by the Department Of Rehabilitation Services Vocational Rehab (DORS). DORS has been a great support thus far - helping with some of my tuition and also with books and equipment costs.

I don't have the care of my personal needs (eating, bathrooming) figured out yet. With the light load I am taking this semester, I'll just address those needs at home for now.

I’m looking forward to the start of this college adventure. I don't think I'll be doing any interviews in the near future, but I still plan to continue blogging and sharing my two cents. Sorry, the blogosphere can’t get rid of me!

I Like Vacations!

I just returned from a beautiful trip to Wisconsin where I went bike riding on the Rails to Trails Elroy-Sparta bike trail, swam, played card games with my family, and went to a play.

I really look forward to going on a vacation. One reason is because it’s a welcome break from the everyday hassles of appointments, therapy, equipment, caregivers, etc, etc. Sometimes the everyday "stuff" of living with cerebral palsy can drive me crazy. It’s nice to get away, relax, explore new places, and hangout with my family. Of course, there are plenty of hassles with traveling, but I try not to dwell on them and try to enjoy the new adventures.


My parents bought this Duet bike 11 years ago. I love riding on it because I can feel the wind in my face and being on trails feels calm and peaceful. I cannot last too long on it because it doesn’t provide enough support. But that’s okay – it’s fun!


The Elroy-Sparta Bike Trail is neat
because it is fairly level (having been an old train track) and scenic. It also has many bridges that you cross and 3 long, dark, creepy tunnels that you walk your bike through.




The picture of me on the bench is when I was taking a lunch break at Gina’s Pies are Square. Yum!




I like to swim. We’ve figured out a way that works well for me. I wear a life jacket (it gives head support) and an inexpensive inner tube. When I’m not relaxing and floating on my back (like in this picture from a few years ago), I can paddle on my stomach and swim around. Moving in the water is so much easier for me than moving with gravity.



This card holder has seen me through many games of GO FISH, Old Maid, rummy, hearts, and poker. This trip we played Back Alley Bridge and Euchre.




Recently, my family has started taking in a play on some vacations. This time we went to the American Player’s Theatre in Spring Green, Wisconsin. It was fabulous!

I like vacations! Can't wait for the next one!

Discomfort at first sight

Ruth, from Wheelie Catholic and A Different Light, wrote D is for Discomfort - a post with her thoughts on an observation that my aide made on our recent trip to Costa Rica. My aide Ryan noticed people's initial response of discomfort to meeting me and my energy put into making them feel comfortable.

Ruth relates to my experiences. And as a person with an acquired impairment, I am guessing that she notices a huge difference in the "before" and "after" first encounters with people.

I have grown up with cerebral palsy, and I am used to people staring at me from a distance, people looking away from me as if they might "catch" what I have, people talking to my friends or family as if I'm not there, and people looking at me with pity and sadness. Even though I am used to it, it still makes me angry, and I get tired of all the energy I have to put into "proving" that I am a real person. Still, I try not to let it get to me.

Ruth has some good suggestions. If you are uncomfortable with people who look different than you, I hope you'll check out Ruth's post. I hope you'll find it helpful.

Illinois Youth with Disabilities Leadership Summit

I just returned this evening from a disability conference in Springfield, Illinois. The Illinois Youth with Disabilities Leadership Summit is a great chance for young people from Illinois to learn about disability history, disability law, and disability advocacy, and a chance to meet and get to know other young people.
This was my first year going as a mentor, and I had a wonderful time.

This is an annual event - if you are a young person in Illinois who has a disability, check it out and consider it for next year!

My Costa Rica experience: A slideshow and reflections

Free MySpace slideshows, photo and video editing at www.OneTrueMedia.com

• Family is a very important part of Costa Rican culture. Most of my host family’s relatives lived very close to each other, and nearly everyday members of the family would get together for dinner or coffee. Often, it would be a very large group. Family members on both my mom and dad’s sides of the family gathered regularly, seemed to know each other well, and had fun together at parties. And, there was always a reason to have a party, including having a visit from me!

• Ryan, my friend who came along on the trip to be my personal assistant, and I were treated like family. Eduardo, Marianela and their daughter Marypaz welcomed us with open arms. On our first night, they had relatives over to the house and ordered a pizza for us. Each morning we shared with the family a homemade breakfast including delicious Costa Rican coffee. Each evening, we shared in making and eating a Costa Rican dinner, we chatted, and we played games. One evening, Ryan and I came home around 8:30 in the evening after a very long day. Our host parents were waiting for us, wanting to hear about our day and share the social process of dinner-making with us.


• Costa Rica has the largest gap between the rich and poor of any country in Central America. Like in the United States, this could be seen in our drives throughout the country.


• I was struck by the lack of healthcare resources available to the people of Costa Rica. In the physical therapy department at one rehabilitation center, the physical therapy equipment and the all the patient beds were located in the same room. The hospital seemed to have only the necessary equipment. There were no extra amenities or “fluff” to make the hospital stay more enjoyable - no therapy wedges, no toys for children, no DVDs or books or magazines for adults, no paintings on the walls.

• In Costa Rica, people take their jobs very seriously and are proud to work hard and serve their customers. On my first night in Costa Rica, my taxi driver, spent two hours helping find the best way to get me comfortably in his taxi. At the end of the trip, one of our bus drivers wanted a picture with each of the delegates, saying, “You are such a special group, it’s a pleasure serving you.” Police officers were very helpful in helping us cross through busy San José traffic.


• At one center that we visited, some of the residents had been there for a long, long time. Some spoke of family that couldn’t or wouldn’t care for them. Some cried a lot, and others were very, very happy to have a visit from our group. Seeing people living in these sad circumstances was sobering and disconcerting. I realized how lucky I am to have a personal, family, financial, technological, and community resources that I have. We need to do better at taking care of each other in our world, and sharing our resources more equitably.


• I found it interesting to hear Ryan’s reflections on the experience. Ryan and I hadn't known each other that well prior to this trip, and this was our first time spending an extended period of time together. Ryan observed that many able bodied people in both the United States and Costa Rica seemed initially scared of me. They did not know what to say or how interact with me. However, once a conversation with started by me, they realized that we did indeed have commonalities. (I, of course, know and experience this fact everyday, but it was interesting to hear Ryan's take on it. I was reminded of Christie Gilson telling me that those of us with disabilities spend a lot of energy making other people feel comfortable with us.)

Ryan also came away from the experience with a profound respect for people with disabilities and their personal assistants. He had no idea how much time and energy it took to perform mundane, but necessary responsibilities. During the trip, he almost always had tasks to do. Once he finished one task he moved right on to the next one.


• All in all, I’ve had a powerful experience that continues to and will continue to impact my thoughts and life decisions. Thanks to all who have supported me.

Music on slideshow: Manu Chao, Me gustas tu

Cool Links

Last week, I did not get to blogging, and I don't think I'll get much blogging done this week either. I've been having neck pain (boy, can pain really sap your energy) and a variety of health care and college-related appointments. So, here are some links that I think might be of interest.

Paul Crichton is a computer expert who works for BBC Ouch Magazine. Paul’s goal is to make websites more accessible to people with disabilities. Last week, Paul interviewed me and invited me to share my thoughts about the Internet.

Speaking of the UK, Gojo is a new website, designed to help people with disabilities in England improve the quality of transportation to enhance their independence. Gojo is looking for suggestions from the public on how to improve the transportation system.

Here is a three-minute video from the Disability Rights Commission of the United Kingdom that shows what the world might be like if people were discriminated against for being able bodied. Sister Edith, from Monastic Musings, has a great Blogging Against Disablism Day post about this video.




Here's a new blog from the University of California Los Angeles about Pathway, a program that provides educational, vocational, and social experiences for people with mental disabilities. Thanks to Ryn Tales, for connecting me to this exciting program that will open doors for many students.

A powerful week

This week I went to the Illinois state capital, Springfield, for the Coalition of Citizens with Disabilities in Illinois (CCDI) annual Disability Rights Conference. There were a variety of workshops on a number of topics such as disability myths (making the comparison of ableism with racism and sexism), disability law, particularly as it applies to employment, and disability bioethics (discussing Ashley X and state futility laws, such as the Texas one being applied to baby Emilio).

I was awarded the Markeeta Award, an award for a youth in Illinois pursuing social justice and disability advocacy. It is named after the first recipient of the award, Markeeta Vincer, who fought successfully to be included in the Chicago Public School System.

I learned about an important bill, HB 1256, that has passed the Illinois House and is currently going through the Illinois Senate. If you live in Illinois, I urge you to call or email your state senator and ask him or her to support this bill. House Bill 1256 is very important for people with disabilities who have the ability to work, but not necessarily full-time. I see this bill as being very important for me personally and to many others with disabilities and stamina issues.
Here's some information from CCDI on the bill:

"-Lack of access to affordable health care forces people with disabilities to work for less or not at all. The current program does not go far enough.
-House Bill 1256 allows people with disabilities to work more often or accept better paying jobs and would allow people with disabilities to earn up to $35,000 (instead of the current $20,000) while paying their share of Medicaid costs.
-House Bill 1256 would allow people with disabilities to accumulate assets to alleviate poverty and promote their independence and self-sufficiency without jeopardizing their health care coverage"

I "rubbed elbows" at the conference with other advocates that I'd heard about - Diane Coleman and Stephen Drake from Not Dead Yet, Mike Ervin, FRIDA advocates, and ADAPT advocates. (I felt like a bit of a groupie.) I had many interesting conversations and an enjoyable time in Springfield.

Sandbox Lessons

I was listening to the song, “You’ve Got to be Carefully Taught” from the musical South Pacific. The song asserts that children are not born racist, they must learn to be racist. I think that same truth applies to ableism. Children are not born believing that some differences make a person inferior; they have to be taught. It's easy to see how Jerry Lewis’s Muscular Dystrophy Telethon, inaccessible buildings, overt discrimination, or the common use of words such as "retard" or "cripple" teach ableism. It is more challenging to realize that even well-intentioned people, themselves products of the culture we live in, can inadvertently foster the ableist paradigm in children.

My mom remembers a telling story that took place on an ordinary day many years ago. My two sisters and I were about 4 years old at the time (we’re triplets) and were playing in our backyard sandbox. It was a warm, sunny summer afternoon. My sisters were running back and forth between the sandbox and the hose to get water for our sandcastles. I was lying on my stomach, as I often did, playing in the sand with my hands, my shovel, and my truck. We were laughing and having fun.

Unbeknownst to my sisters and me, a six year old boy who was visiting our next door neighbors was intently watching us through the chain link fence.

At some point, one of my sisters went near the fence, and the boy asked her, “Does he walk?”

My mom says she held her breath, ready to jump into the conversation and stand up for me. Ever the advocate, she would've said something sappy like, “He can’t walk, but he's really good at playing in the sand.”

Had my protective grandparents been around, one of them might have scolded the boy, “Hey! That’s a rude question!”

An educator or social worker, seeing a potential peer socialization experience for me, might have answered with a heavy, deliberate sigh, “No… he's not able to walk.” Then with forced enthusiasm, “Why don't you go play with him? It doesn't have to be very long, just a few minutes. You'll feel good helping the boy."

A healthcare provider, intending to minimize the importance of physical differences, might have lectured the boy on my condition of cerebral palsy, "The motor area of his brain was damaged because he was born too early. This damage causes him not to have good control of his arms and legs. Even though his body is different from our bodies, he's really just like us.”

The boy's dad, not wanting his son to be offensive or rude, might have pulled his son away from the fence, “Shhh…. Don't stare! Don't make him feel bad."

On the surface, these responses to the boy's question may seem appropriate. But imagine, if you will, the boy at the fence asking my sister a different question. Suppose he asked, "does he have red hair?"

"No, he doesn't, but he's really good at playing in the sand."

"Hey! That's a rude question!"

Heavy sigh, “No… he doesn't have red hair.” Forced enthusiasm, “Why don't you go play with him? It doesn't have to be very long, just a few minutes. You'll feel good helping the boy."

"He’s genetically heterozygous for the brown haired trait. Even though his body is different from our bodies, he's really just like us.”

“Shhh…. Don't stare! Don't make him feel bad."


So, how did the four year old's and six year old’s interaction play out that sunny summer day?

Not assuming any hidden meaning to the boy’s “Does he walk?", my sister simply said, "no."

The boy accepted her simple answer to his simple question. Then he moved on to his more important question, "Can I play? We could use my yellow dump truck to move the sand.”

The boy, and soon the neighbor kids, came over. The sand castles got bigger, the laughter louder. We all had a great time.


Be sure to check out the many other posts for Blogging Against Disablism Day. Thanks, Goldfish for organizing this event.

Disappointing news and exciting news on the same day

Yesterday, I found out that I was chosen as an alternate for MIUSA’s Costa Rican Exchange. If a spot opens up, they'll call me. I’m disappointed. I would have loved to have gone. It sounds like a wonderful experience.

I had some good news yesterday, too. I won the Markeeta award, an award presented to an Illinois youth for social justice and disability advocacy. Thanks to Tara Dunning from the Statewide Independent Living Council and Meredith Hill for nominating me. My interest in advocacy took off when I attended the Illinois Youth with Disabilities Leadership Summit in 2003. I’ve since gone each summer as a participant and as a peer mentor. The Summit is a great way for young people with disabilities to meet each other, meet interesting adults, and learn about advocacy and leadership. If you know an Illinois youth who might be interested, applications for this year’s summit are due May 18.

The Juggling Act

With my cerebral palsy, I have to be very conscious of setting priorities for my time and energy. I must plan my time very carefully because I have very limited stamina and activity causes painful spasms in my neck, shoulders, back, and legs. Last week, I sang with my choir for the Holy Week services. It was a wonderful, exhilarating experience that took all my physical energy. My blog got pushed down my priority list.

Also last week, I got called for an interview by Mobility International USA. I'll find out if I get accepted for the Costa Rica Disability Exchange Program on April 20. I'm keeping my fingers crossed, I hope I get accepted.

Description of picture: Five colored juggling balls in the air.

My Autistic boy and other adventures in fatherhood

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

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

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

Thanks, Jerry.

And they don't even have snow in Los Angeles

Four days after our first snowfall of the season, I had a dentist appointment. The dental office is about a half mile from my house. I live in an urban area with sidewalks and curb cuts, and I should be able to get many places by myself. However, on that day I was appalled and disgusted by the impossibility of getting from one place to another. Many of the sidewalks, especially in front of businesses, did not have a cleared path wide enough for a wheelchair. And worse than the sidewalks, were the curb cuts, which were mounded high with snow and ice from the village’s snowplowing of the streets. Fortunately, my mom, who had accompanied me, worked to clear a safe path for me. We skipped going to the bookstore like we had planned, because it was just too much effort.

I live in a town that prides itself as being progressive. Yet, when I can't get to places like the dentist office, shopping, and our accessible train station, I will have trouble ever being independent. I need my town to come through for me.

And I know I am not alone. A recently published Los Angeles County Health Survey found that, "among persons with a physical or sensory disability, 1123 (84.7%) reported environmental barriers related to their disability." These barriers were found to interfere with health care, social activities, and quality of life. This survey seemed like it explored highly relevant issues, but I have to say they seem rather obvious to me.