Where is the outrage?

The hate crimes against people with disabilities continue. Last month, two teens and 1 young adult were sentenced in the U.K. for the brutal murder for sport of Brent Martin.

Today, it is reported in a Cleveland newspaper that 3 12-year old students, 2 boys and 1 girl, beat their 12 year classmate, who has cerebral palsy.

“A 12-year-old boy who has battled cerebral palsy and seizures his entire life couldn't fight back last week when three students attacked him after a tutoring session.
The sixth-grader felt pain in his groin after the attack and had to have a testicle removed the next day, his mother said.
East Cleveland police are investigating the attack, which happened Jan. 31 at Prospect Elementary School.
Detectives are waiting for a doctor to determine whether the beating
caused the injury, Commander Dan Heglaw said.
Three sixth-graders - two boys and a girl - kicked the 12-year-old in the back and smacked him in the head about 5 p.m., an hour after school security left the building, police said.”

This was not the first time this child was hurt by students.

“The boy is often targeted by other students because of his medical condition, a neurological disorder that impairs people's ability to control their movement and posture. He was struck by another student in November, his mother said. The school implemented a "no-bullying policy" after that attack, she said.”

This beating occurred on school property after a tutoring session. This student has been targeted more than once by his classmates. The paper reports Superintendent Myrna Corley’s response to this latest beating,

“It's an unfortunate situation.”

UNFORTUNATE?!! Better words might be: Outrageous! Will not be tolerated in my school! A hate crime that will be fully prosecuted!

The 3 students have been suspended, but that is not enough.

Where oh where, do 12 year old kids learn that violence and abuse of those that are different than them is acceptable? I just don’t believe that children are born hating. Our society is teaching the dehumanization of people with disabilities. It happens all the time in many, many forms – from our language, to our lack of inclusion, to the lack of coverage and outrage about this physical violence. Violence against with disabilities is a hate crime.

And, I think this boy deserves a fully paid transfer to another school where he will be safe and where he can do what he is supposed to be doing at school - learn.

UPDATE:
Related posts -
Disability Rights: Why it is YOUR problem
Dave
And more violence...
Respect and Disability Advocacy

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.

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.

Kids Are Kids!

Thanks to Ruth and Connie for finding this interesting article about a recent study that concludes children with cerebral palsy are no less happy then their able bodied peers,

The study surveyed 500 8-12 year old children with cerebral palsy and found that while they participated in less activities then able bodied children their enjoyment of life was just as great.

Professor Alan Colver, of Newcastle University who conducted the study hit the nail on the head.” The change now needed concerns attitudes. Pity and sorrow should not be directed to disabled children because our findings indicate that they experience life as do non-disabled children. Maximum effort is needed to ensure their rights as citizens, rather than as disabled children, to participate in society as fully as other children."

Of course! Kids are kids. They just want to have a good time. Check out pictures of Moo, Ellie, Holland and Eden all having fun.

Let’s do what we can to not take happiness away from children through exclusion, pity, and lack of opportunity.

Two must reads on the "Ashley Treatment"

Today I received links to two stories from FRIDA (Feminist Response in Disability Action). Since the American Medical Association's refusal to speak against the Ashley Treatment, FRIDA has been attempting to work with the AMA on the issue of human rights for people with disabilities. This coming weekend the AMA holds its annual meeting, and FRIDA will be there.

In "Doctors: Whose Side Are They On?" former Jerry Lewis poster child Mike Ervin explores why the medical community seems to have such a hard time seeing people with disabilities as people. He asks,

"How can so many of them attain so much education and remain so oblivious to the basic humanity of people with disabilities? Might there even be something about the detached manner in which they are educated that makes them more susceptible than most to disability bigotry?"

Mike asked Lisa Blumberg, a disability rights activist, her opinion and she said,

"I don't think doctors are instinctively more prejudiced than others about disability, but they are in a position to act on those prejudices since they have power over people's bodies. In addition, their view about life with a disability may be distorted because they see disabled people in settings where the focus is on what is 'wrong' with them and whether they can be 'cured.' It's a vicious cycle - doctors are infected by the prejudices of society, then doctors' prejudices become prejudicial practices which fuel the prejudices of society."

It's a must read. Very thought provoking.

FRIDA also sent the story, "The Other Story from a 'Pillow Angel': Been there. Done that. Preferred to grow." from Anne McDonald, a guest columnist for the Seattle Post Intelligencer. This is the story of a woman who has a story quite similar to that of Ashley X. She was abandoned and starved as a young child because of motor skills at the level of a 3 month old and a diagnosis of severe retardation. At age 18, she weighted 35 pounds and was 42 inches tall. She says, "

My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years."

Another must read. Check it out.

I wonder - how many people are there that are deemed worthless, but simply don't have a means to communicate? Of course, ability to communicate, level of cognitive ability don't matter on the issue of worth, because a person is a person. It's as simple as that - human rights are for all people.

Reflections on Self-Love, Self-Worth, and Family

The 15th Disability Blog Carnival will be on the theme of family and disability. Able-bodied or disabled, all children learn their value from the people with whom they spend time.

From listening to the childhood reflections of others and from my own childhood experiences, I see that the young child with a disability is like a sponge, absorbing and internalizing the feelings and actions of family and caregivers. I've put together a composite of some of these reflections.

If I’m a little child I feel love and consequently, value when:

My mother's eyes, voice, and face light up upon seeing me, rather than becoming dark, dreary, and sad.

Even if I'm not able to verbally respond, my aunt talks to me using my name, rather than about me with impersonal pronouns as though I'm not there.

My grandfather spends time with me, telling stories rather than letting me sit alone in front of the television.

My uncle casually helps me get my jacket on so we can go the park, rather than making a big fuss like I'm slowing everyone else down.

My brother listens to me when I say, "you're treating me like a baby," and responds, "you're right, I'm sorry," rather than laughing at me or ridiculing me.

My grandmother enthusiastically greets me when I come to her house, rather than complaining about the work she had to do to accommodate my needs.

My father cleans up my drool or my dirty diaper with matter-of-fact simplicity, rather than shaming me about bodily functions over which I have little control.

My caregiver seeks to understand me when I ask a question, rather than becoming annoyed with me.

My stepmother holds me with a strong yet gentle touch making me feel safe and secure, rather than with a tentative hold leaving me to feel both dirty and frightened.

My young cousins follow the example of my inclusive adult relatives, finding ways to have fun with me, rather than giving up without even trying.

My godmother learns some sign language so she can communicate with me directly, rather than relying on my parents to be intermediaries.

My parents’ longtime friend rejoices in the fact that I exist, rather than talking about what a burden I must be.

My parents correct a neighbor who laments the hardship a disabled child must bring to their lives, and articulate my value, rather than list my needs and their fears.


The child's view of himself or herself is shaped by everyday life experiences and interactions. If a child with a disability feels loved, self-love and self-worth will follow.

Friends' true views come out when a child gets sick

Update - Cicely came through her surgery well, and her mom shares the hospital experience here. The mom learned more about the ableist world than she'd care to believe is true. She also thanks everyone for their prayers.


"God is taking your burden away."

"Maybe it's for the best."

Dave Hingsburger shares a painful letter from parents who are shocked to hear these horrible comments from friends when their previously healthy little girl, Cicely, suddenly becomes very ill.

The mom asks Dave for "loud prayers" - for people to pray for Cicely and wish her and her family well.

Dave prays loudly and beautifully for Cicely, her family, and our world. "I pray that all the prayers today for Cicely, for her mother, for her father, be loud enough to shatter prejudice and bring down preconceptions. I pray that they are loud enough that barriers tumble and doors are blasted open."

Amen.

I join in prayer for Cicely, her family, and our world.

Protecting the Rights of Ashley X and Other Children

The Washington Protection and Advocacy System (WPAS) issued a report today on the results of their investigation of the "Ashley Treatment". (This agency investigates allegations of abuse and neglect of persons with disabilities in the state of Washington.) To read the full report of their findings and of the corrective actions required of the hospital click here.

"The sterilization portion of the "Ashley Treatment" was conducted in violation of Washington State law, resulting in violation of Ashley's constitutional and common law rights.

-The Washington Supreme Court has held that a court order is required when parents seek to sterilize their minor or adult children with developmental disabilities, and at the individual must be zealously represented by a disinterested third party in an adversarial proceeding to determine whether the sterilization is in the individual's best interests.
-Courts have also limited parental authority to consent to other types of medical interventions that are highly invasive and/or irreversible, particularly when the interest of the parent may not be identical to the interests of the child. Thus, the other aspects of the "Ashley Treatment" - surgical breast bud removal and hormone treatments - should also require independent court evaluation and sanction before being performed on any person with a developmental disability.
-The implementation of the "Ashley Treatment" also raises discrimination issues because, if not for the individual's developmental disabilities, the interventions would not be sought. Such discrimination against individuals because of their disabilities is expressly forbidden by state and federal law."

The WPAS explores why the violations occurred and states the corrective actions that Children's Hospital will take to protect the rights of children in their care. Some of those actions include: implementing "a policy to prohibit sterilizations of persons with developmental disabilities without a court order", implementing "a policy to prohibit growth-limiting medical interventions on persons with developmental disabilities without a court order", and including a disability rights advocate on the hospital ethics committee. The WPAS also states their plans to work with the public, health insurance companies, health care providers and disability advocates to improve services and supports for children with disabilities and their families.

First Loss

Each summer when I was little, my family would rent a cabin in Wisconsin. For me, a highlight of the vacation would be an afternoon of horseback riding. My dad and I would ride double on the horse. I would sit in front of him, leaning on him for support. My dad would hold me tight and keep me stable. I loved it! My horse was always a calm and friendly one. I would pet the soft, smooth fur and talk to my horse by name. I felt safe, while experiencing the up-and-down rhythmical movement of the horse. I especially enjoyed the thrill of the horse galloping. We'd ride a trail that went through the woods, feeling the cool breeze, listening to the chatter of the birds, and smelling the fragrant flowers and pine forest. The woods felt majestic and peaceful, and I felt contented exhilaration on that one hour trail ride.

One summer, when I was about eight years old, I was totally caught off guard when my dad told me he could not safely ride double with me anymore. I was shocked. I couldn't believe it. Why couldn't I do something that the rest of my family could do? Would I be able to go horseback riding when I got older? How could it be that my strong dad could not keep me safe on a horse? What else wouldn't I be able to do? I felt really sad about the loss of horseback riding on summer vacations.

I was at a turning point in my life. For the first time, I realized that my cerebral palsy presented me with some limitations. You might wonder how I made it to eight years old without recognizing this point. I suppose part of the reason had to do with cognitive development. But, I think a large part had to do with my parents’ commitment to do activities that the whole family could do. Also, my same age sisters didn't know any differently either.

There were other times as a child, when I saw able-bodied children doing things I wished that I could do. I had watched kids go off to baseball practice and would have loved to have joined them. Bike riding and rollerblading also looked like a lot of fun.

Although missing out on some activities made me feel down at times, I can't say that, as a child I ever wallowed in sadness. There was just too much life to be lived. There were so many fun things that I did do, like singing in a choir, participating in a theater summer camp, and swimming with an inner tube and lifejacket (I could play a mean game of freeze tag in the freedom of the water). My parents altered a Baby Jogger racing stroller so that we could go on hikes in the woods. I continued to enjoy the cool breeze, the chatter of the birds, and the fragrant smells of the forest.

Description of 1st picture: I'm about 6 years old, sitting with my dad on a brown horse getting ready to go on a trailride into the woods on a beautiful, clear day. I have a smile on my face.
Descripton of 2nd picture: I'm about 10 years old, sitting in a customized 3 wheeled stroller on a hiking path in the woods on a beautiful day. I am smiling. My dad is next to me.

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.

Disability and Gender Stereotypes

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

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

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

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

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

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

I look forward to reading the other posts.

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.

Reflections: The "Ashley Treatment"

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

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

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

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

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

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

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

Imfunnytoo at Did I Miss Something also addresses the

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A mother and father’s betrayal

Update: See January 15 post.

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

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

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

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

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

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

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




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

Imfunnytoo: It begins with Ashley

Mary Johnson: Ashley’s treatment in the media

Penny Richards: Sigh

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

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

Nufsaid: The Ashley Treatment

Wheelchair dancer: Human Rights

Ruth Harrigan: The Ashley Treatment

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

Birthday celebrations

As many of you know, thanks to Connie and Steve Kuusisto, today is my birthday, my 21st to be exact. Yes, now I am legal.

When I was little, I would eagerly look forward to my birthday, particularly my birthday parties. Whether it was playing freeze tag in a swimming pool, going to a Chicago Wolves ice hockey game, or playing basketball with a hoop that was lowered to my level, I had good times with my friends, playing games suited to my abilities and going to events that were wheelchair accessible. During my birthday parties, my differences didn't matter. I was just a boy having fun with his friends.

Thank you for the birthday wishes,

David

Name on the blackboard

This entry is my reflection on my first interview.

In this blog, I will NEVER reveal the identities of my interviewees. The names I use will always be fictitious. However, the issues discussed here will be real issues from real lives.

"Ashley” is an articulate, thoughtful, hardworking college student who has a learning disability. She shared her thoughts on some of her elementary school experiences.

Ashley remembers the school environment as overwhelming and chaotic. Ashley recalls being terrified to go to school and feeling tremendous relief when it was time to go home.

One of Ashley’s biggest fears in first grade was getting her name on the board. Getting your name on the board meant that you were a “bad girl”. To Ashley, her name would appear on the board at random times. Her name was on the board because she had her math book out; her name was on the board because she had her spelling book out; her name was on the board when she moved too slowly; her name was on the board when she moved too quickly. The consequences at school seemed arbitrary and scary. Ashley now realizes that she didn’t catch all the rules and their subtleties, making her feel inferior, incapable, and sad through much of elementary school.

Ashley said that high school was a better experience for her. Slowly, she started to realize that her weaknesses and challenges didn’t define her; that she was more than her disability. She started to discover her many strengths. When Ashley separated her challenges from her identity, she was able to find strategies to make school work for her. She met with teachers regularly to clarify expectations and rules; she developed the courage to ask for the accommodations that she needed, and she sought to follow her strengths, not dwelling on her weaknesses.

A few thoughts –
A child who seems to be misbehaving may just not understand the rules.

Everyone should be treated with dignity. A person’s identity is extraordinarily complex and cannot be simplified into a collection of strengths and weaknesses.

Something that teachers and parents could do for children with disabilities is to help them see that their needs do not define who they are.

The unique gifts that all children have to offer should be embraced.