Year in Review: Reflections on the Ashley Treatment and Other Memorable Posts

When I planned to take a year to interview people about growing up with a disability, the blogging was an afterthought. It was a way to share the interviews and some of my thoughts. 2007 didn't quite go as I expected, project-wise and blog-wise, and there was so much learning that I didn't anticipate.

In January of 2007, I heard about the "Ashley Treatment" - the so-called treatment being a hysterectomy, breast removal, and high-dose hormones to suppress the growth of a 6 year old girl with cerebral palsy. I didn't think I was naive - I have a loving home, but knew very well that many in the world don't. I've had my own negative experiences with societal institutions - healthcare and education, in particular. I have experienced ableism - discrimination based on ability. I had read about the civil rights movement, listened to black friends talk about racism, listened to women talk about sexism. But, blogging about the Ashley Treatment was a turning point for me. I just did not realize that so many, many people could think that what happened to that little girl was ok. Some people I care about thought it was OK. Some people I didn't even know thought they could say cruel and hateful things to me, because I spoke for this child's rights.

So, I guess I was naive.

A flood of emotions and thoughts come out of that experience. What is it with this world that we cannot recognize humanity in each other?

I realize how little the able-bodied community understands about living with a disability. They see us as less than they are, often as disposable, and they feel sorry for our caregivers. Our cultural institutions don't support us, and the media misrepresents us or worse.

Now I see many more injustices in the world. And I'm sure that there are many more that I don't see. So many people in the world are seen as "less than", as disposable.

And sometimes I see injustice where there is none. This reminds me of an episode of the TV show House, where Dr. House, who has a leg impairment, sees Christmas candy canes, and says, "Candy Canes! Are you mocking me?" Except in real life it's not so funny.

It's hard not to feel cynical, frustrated, and hopeless. (Check out Cripchick's recent posting on society's reactions to another young child with cerebral palsy. It's tempting to withdraw and pull myself out of all of this stress. Why put myself through the hardship of living in a broken society, a society where many members are not accepted for who they are?

But, I won't withdraw. I am not going to let others define me. This is my world, too. And, I want change. Actually, I want change now, and I feel impatient. (Some days I really don't want to be spending my time in school. My stamina is limited, my health needs take time, and I feel a restlessness spending my productive energy on schoolwork. I'd like to have time to pay more attention to what's happening outside of my life and outside of the classroom. I'd like to get back to interviewing.)

I have, as well, developed a renewed sense of appreciation for activists of all stripes both now and throughout history.

So blogging about the Ashley Treatment changed me.

A few other posts from 2007 that have a strong meaning for me:

1. A Day at Work. In this post I share the typical work day of Chris, a mail clerk at Rotary International. I am very proud of this post. It’s about a man who works hard and loves his job, and the fact that he has a disability is irrelevant. Every workplace should have workers like Chris. If the media, educational facilities, health care institutions, airlines, and the government had workers as conscientious and dedicated as Chris, my life and the lives of others would be impacted immeasurably.

2. Sandbox Lessons. This is the post I wrote for Blogging Against Disablism Day 2007, a post that shares a story from my childhood about how children become ableist.

3. My Costa Rica Experience: A Slideshow and Reflections. My trip to Costa Rica was an amazing experience and I am so grateful to Mobility International USA; Ryan my personal assistant; Eduardo, Marianela, and Maripaz, my host family; and my family and friends who supported me for this wonderful opportunity to learn a little about life in Costa Rica and to learn a lot about me.
4. Understanding the Less Common Perspective. So many people have difficulty understanding my perspective and life experiences living with a disability. This post shared an essay I wrote about my educational experiences for my English class.

My next semester starts in a couple of weeks. Taking 2 classes at a time fills my time. I hope to blog when I can.

I wish you and yours a safe and blessed New Year. All the best in 2008!

Carnival time!

A Few of Our Favorite Things, the 27th Disability Blog Carnival, is up at Andrea's Buzzing About. Here's what Andrea says, "We all have a number of little things that not only delight us in small ways, but also make life just so much more pleasant, and even help reduce our stress loads. These tend to fall into three categories: technology that enables us to do things, creature comforts, and human interaction. Got your cuppa? Cats and dogs settled down? Then let’s begin!"

I think I'll take a break from end of the semester papers and do just that!

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!

Disability as Culture

Check out Cross-Cultural Communiques from Andrea’s Buzzing About. When I was writing an essay about my educational experiences for my English class, I noted the tremendous difficulty that able-bodied people had in understanding my experiences when they were so different than their own. Andrea broadens the discussion to look at cross-cultural relationships. She shares a list by an unknown author designed to address "…the assumptions we mentally trip over when working with people from other national, religious or ethnic cultures." Andrea notes, "I rather doubt that the author(s) considered how broad the cultural spectrum can be."

The first one on the list is "What seems to be logical, sensible, important, and reasonable to a person in one culture may seem stupid, irrational, and unimportant to an outsider." All twelve make you think.

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.

26th Blog Carnival

How do you relax or unwind? That's the question over at the latest Disability Blog Carnival up now by Greg at Pitt Rehab. Lots of great posts. Check it out!

Dave's Faves 2

Three very different links:

A horse for a service animal? Interesting.

Ruth’s back-up aide didn’t show up. She offers this prayer. I hope today is a better day for you, Ruth.

A pharmacist is fired by Walmart because of his diabetes. This is why we need the ADA Restoration Act.

Carnival #25!

Kara Sheridan has the 25th Disability Blog Carnival up at her blog, "If the World Had Wheels."

The carnival is an assortment of posts on the wide-open theme of "If...." Looks like lots of creative responses - I hope you'll check them out!

Imagine a world without celebrity gossip

If we spent less time talking about Britney Spears ……

*The dramatic fall in gossip would lead to a gigantic reduction in carbon dioxide emissions, and global warming would slow.

*The media would have to find something else to fill their magazines, websites, and talkshows – say the Iraq War? Crises in Darfur and Somalia? Healthcare for children?

*With all our extra time, we could actually research the Presidential candidates and cast informed votes in the primaries.

*Maybe people could fill the profound silence by listening to the perspectives of minority groups, such as people with disabilities.

Happy Anniversary to us!

We've had one full year of disability blog carnivals - thought-provoking, interesting and fun collections of posts about all sorts of different topics.

Disability Blog Carnival #24: The 1st Anniversary Edition is no different - varied, great posts on the theme of milestones. Head on over and check them out!

Thanks to all the hosts, posters, and commenters - I really enjoy our every other Thursday gatherings. Quite a blogsosphere community we have developed! And a huge applause for our fearless organizer Penny Richards!

Another assault on human rights

How can it not break your heart to hear of people being treated as less than human? I know it can be seen over and over again around the world, but it still feels like a punch in the stomach, knocking me breathless and sapping my energy.

Last January, I was shocked to learn of the decision and public support for the surgical and hormonal alteration of a 6 year old girl. Now it's happening again, this time in the UK, and this time I feel older and I am not surprised; I just feel great sadness. Why is it that our societies don't or won't support families challenged by the care of their loved ones with disabilities? How do we convince ourselves that we don't need to think creatively, that we don't need to problem-solve, that we can jump right in and tinker with the healthy body parts of another person?

I hope I never am convinced. I'd rather feel a punch in the stomach than cold, mind-numbing apathy.

Helpful links:

Penny Richards at Disability Studies at Temple U is continually updating links to bloggers' views on this issue.
When the Slippery Slope Becomes a Mudslide - Exceptional Parent's position statement
United Nations Convention on the Rights of Persons with Disabilities
Modify the System, Not the Person from the Disability Rights Education Rights & Education Defense Fund

Voting questionnaire

A friend from my high school days contacted me about a newstory that she is writing for her journalism class at NYU. Katie is a journalism and politics major, and is writing about access to voting for people with disabilities. I answered her questions and offered to post her questions here so that she could maybe get a few more responses. If you have a disability and can take a few minutes to answer any or all of her questions by noon on Wednesday, October 10, she'd greatly appreciate it.

Two New York Times articles last summer (here and here) addressed the issues and delays of voting machines which allow independent access to voting by those with disabilities.

Katie's questions:

1. Have you voted (for President, Congress, even school board)?

2. If so, tell me about your experience - did you use a paper ballot or a machine? Did you find the system difficult? Any problems getting to the voting place?

3. If not, why didn't you vote?

4. Do you plan to vote in the 2008 Presidential election?

5. There is a federal law stating that all disabled persons must be able to cast their vote without assistance, because someone helping them might influence their vote. Do you think this is important? Is voting on your own a part of being independent?

6. The new law discussed in the New York Times articles is being debated because experts are worried that the voting machines that are easiest for most disabled people to use may not be totally secure - it is possible that hackers could hack into the system and screw up the votes. So, politicians are trying to balance what is most important - giving the disabled full access to voting or protecting voting security. What do you think?

7. Do you think it is important for every effort to be made to help disabled people vote? Why?

8. What would you think if you found out that the voting machines used to help the disabled were being canceled because of hacking concerns?

9. What would be the easiest way for you to cast a ballot?

10. Do you have any political issues that are especially important to you? What are they and why?

Email your answers to Katie at: km1312@nyu.edu no later than Wednesday at noon. Your thoughts on any of the questions would be appreciated.

Thank you!

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.

Dave's Faves 1

School and health issues are keeping me out of advocating trouble. I’m not having as much time as I’d like to post my thoughts, but many other bloggers are writing great stuff, and there are always interesting things to be found in the news. So, welcome to the first “Dave’s Faves”, where I’ll be linking to some of those interesting finds.

Steve Kuusisto, dealing with a guide dog stress injury, hits on an issue that is all too common for people with disabilities. “I wonder sometimes if the able bodied public knows that people with disabilities have stress injuries that are the result of their accommodations. Wheelchair users have carpal tunnel syndrome; back aches, neck aches, profound tension headaches—all of these things are essentially the norm for PWDs." So true. I need my computer because I cannot handwrite, but I get neck pain from using my computer too much. It’s tough to figure out the right balance when the computer is a necessary part of my independence and yet causes me so much pain.

"This is best for you." Ruth eloquently writes about those simple, yet incredibly annoying words that people with disabilities hear from total strangers. “So far the winner is a secretary at a local DME provider who ‘decided’ which wheelchair was best for me in less than a minute. I suppose she had a chart in front of her which indicated the exact model to "prescribe" for a quadriplegic. When I brought up the issue of what medical folks thought I should have, she promptly replied ‘Oh no. The model I gave you is the one you need.’”

As people often presume incompetence in all areas when one is in a wheelchair, Bridget Houlihan offers great examples about "what it takes to simply be your best when your have a disability." I can relate to her experience of hoping a college education would encourage people to take her more seriously.

“Bah humbug.” In Goals schmoals, Terrible Palsy shares her feelings about school and therapy goals for her son. “Stick your goals where the sun don’t shine. Happiness is all that matters.” Right on!

Thanks to Ruth for noting this USA Today article about the rise in reporting of housing discrimination. I did not know that housing discrimination on the basis of disability was as prevalent as discrimination based on race.

Ever been in the hospital at night? I have. Billie, at Micropreemie Twins, shares the wonderful night’s sleep she and her daughter get while in the hospital. Not! It’s common knowledge that sleep is necessary for healing – someone needs to tell hospital personnel.

Disaboom is a new website hoping to become a resource for the disability community. Check it out.

Mobility International USA is looking for 15-17 year olds with and without disabilities to participate in a 21 day trip to Bahrain next summer.

Finally, Amanda, at Ballastexistenz, shares and analyzes the story of a boy who really was a hero in Kid Hero Saves a Teacher.

Carnival time!

Check out Pedestrian Hostile for Disability Blog Carnival #23, "Simply the Best!" I haven't had a chance to check out the links, but there are a lot and they look varied and interesting.

It's Carnival time!

Jodi Reimer at Reimer Reason has put together an awesome collection of posts on the them of "Resilience". Check them out!

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!

Telethons and Pity

Today is Labor Day, and, to many people, that means it’s time for Jerry Lewis and the MDA Telethon. I had never watched the telethon, and this year I checked it out for the first time. I have to say, I didn’t watch much of it, and it was enough. I am not going to comment on the mission of the Muscular Dystrophy Association (MDA); I am not familiar it. However, I would like to comment on the destructiveness of pity.

1. Pity fosters negativity. The negative aspects of the condition are emphasized and magnified, rather then the positive aspects and enormous potential of the individual's life. Instead of focusing on what a person can do by embracing all their strengths and gifts, pity limits a person.

2. Pity promotes the view of charity rather than the view of inclusion. Charity for pity divides people into 2 groups, the “haves” and the “have nots”. The premise is that the person who “has” will help the person who “does not have,” because the “haves” feel sorry for the “have nots”, rather than because it is the morally appropriate action to do. Unlike pity, inclusion encourages respectful dialogue to discuss ways to adapt to the obstacles of society.

3. Charity often seems focused on making those that contribute to the charity feel warm-and-fuzzy-good about themselves. That is the wrong focus. An action should be taken because it is the right thing to do, because it is fair and just.

4. Although often without consciously recognizing it, the person who is pitied usually has to conform in some way to the giver’s expectations and stereotypes to receive the charity. For example, in extracurricular activities in school, it seems to me that children with disabilities often have to participate in the sport or activity that has the most willing coach or advisor, rather than in the activity that the child likes the best or has a natural affinity for.

5. Pity lowers an individual’s self-esteem. It’s hard to feel good about yourself, when you are seen as a drain and burden on others.

6. Pity towards people with disabilities gives society the false impression that disability and happiness cannot coexist. That isn’t necessarily true, and that simply serves to cause more pity.

7. Another problem with charity for pity is that it can give the impression that once the charitable act has been done, societal responsibilities are finished. A corporation that publicly writes a check to MDA is still obligated to provide an inclusive work environment with fair opportunities even though they likely won’t receive public recognition for those actions.

Check out Protest Pity, The Blog Against the Telethon, for an excellent collection of thought-provoking posts about the telethon from the point of view of people with disabilities.

New Television Channel

UPDATE: New blog address for [with]TV found here.

Check out a new website and link on my blogroll, [with]tv. Connie has been asking me to write about this for a while, and I’m just now getting to it.

According to its blog, [with]tv is “ a start-up corporation devoted to providing television and Internet programming of, by, and for people with disabilities.”
Connie, from Planet of the Blind, is a volunteer blogmaster for the website and is looking for people to submit posts. You don’t have to be a blogger to participate. You can email Connie at articles@with-tv.com.

Yet another way for our perspectives to be heard. How cool is that! And, when you visit the [with]TV website, be sure to sign the guestbook and share your ideas and support.

Move over David Letterman and BBC Ouch, here come the bloggers!

Welcome to the 21st Disability Blog Carnival! Thanks to all who participated, and thanks to our fabulous organizer, Penny Richards. The topic for this carnival is Top Ten Lists, and people put together a variety of lists on a variety of topics. There were, however, some common themes to our lists.

Charles Darwin said, “Adapt or Perish." Well, we’re adaptable…

"If you hung with us long enough you might be too,” says Midlife and Treachery's I'mFunnyToo in her post, "Top Ten Reasons for the Able to Pay Attention".

Greg Traynor from Pitt Rehab talks about how his service dog helps him in "Top Ten Reasons to have a Service Dog". “Having a service dog empowers and enables me to become more independent."

Tokah, of From Where I’m Sitting, talks about places to go to find people who need to adapt their attitudes in "Top Ten Day" - antique sailing ship, anyone?

Speaking of sailing --- Elizabeth McClung, from Screw Bronze has learned a few lessons from a recent sailing trip - lessons about rudders, EMTs, and escaping an eavesdropping boy's sexual questions.

Information Removes Barriers. The more we can know and understand about each other, the more inclusive our society can be.

Over at Arthritic Young Thing, Zephyr offers strong, specific suggestions for supporting someone with Post-Traumatic Stress Disorder. She says, “Remember, it’s not about you.”

“Help me know what to expect,” and “tell me what ‘to do’, not ‘what not to do’,” says Jodi from Reimer Reasons in "Top Ten Ways to Support People With Intellectual Disabilities".

Andrea from Andrea's Buzzing About shares the "Top Ten Things About Having Face Blindness", like "less clutter around the house without a gazillion photographs of family relations."

In "How to Use The Sidewalk: Etiquette Tips for Walkies", Wheelchair Dancer explains some rules of the road. "Keep your coffee/purse/briefcase under control. I hate being hit in the face or scalded by Starbucks.”

Get the facts straight about Down Syndrome by reading Michelle’s post on Big Blueberry Eyes. Do you know: Down or Down’s? Which chromosome is affected? What’s the prevalence?

Pity the Fool.

Dave Hingsburger at Chewing the Fat has been wondering. "I wonder why people choose to work within the disability field and then resent the needs of people with disabilities."

Shawn, from Along the Spectrum, has some advice for the Autism Speaks Wright family, and for any of us consumed with pity, "Breathe in, breathe out, move on" and “When it starts to feel like everyone is against you, you are probably your own worst enemy.

Boxes, boxes everywhere; let’s dump the labels and see people as people.

The dad at Autism Bites shares his "Top 10 Snappy Answers To Annoying Comments". To “all he needs is more discipline, and he'll get the message,” he’d say, “yup, it’s true –if you give a child enough time outs, he’ll just stop being autistic. And if I speak French to you loudly enough, you’ll become fluent!”

Kathryn from Ryn Tales gets rid of boxes and sees the unexpected blessings of going to Holland. “I got to read a lot of poetry dissing the Dutch” and “the lines are shorter” and “my marriage has remained strong and wonderful.”

Charming BB's mom says, "My favorite phlebotomist is Cheryl." She shares her newly acquired language and more in "10 Things I Never Thought I'd Say."

You bet, and proud of it!

I wrote a post last April listing my tips for service providers - namely, respect, respect, and more respect. “You were not hired to be my minister, my parent or my buddy.”

Karen, an occupational therapy student and new blogger is stepping into a new world. She shares her love of her new career and learning through reading disability bloggers, “I realize, again via these blogs, that non-compliance has less to do with the client being stubborn and more to do with me not fully understanding their true needs.” Yes!! You are on your way.

People say the darndest things.

Paula Apodaca of E is for Epilepsy shares two lists full of incredibly dumb things people have said to her. “You have epilepsy so you must be retarded,” and from a doctor, “your mother was likely frightened by something while she was pregnant with you.”

“Try walking a little further each day” and other unhelpful advice makes up a list of "Top Ten things not to say to a PWME", at L’Ombre de mon ombre.

You’ll be amazed at what has been said to Jacqui of Terrible Palsy. Check it out in “Where did ya hide me M&Ms?" “He’s too good looking to have CP.” I have CP and I’m good looking – if I do say so myself! ;-)

AmpuTeeHee shares a really awful day full of insensitive stupidity, that starts with, “I know about you people” in "Tulips sure, but it’s not all wine and roses over here".

Ever wonder what it’s like to be Brad Pitt or Angelina Jolie? Ema from Rainmom and Life under the Umbrella shares the "Top 10 Reasons autism is like fame" – “having your past scrutinized to discover your sins” and other similarities.

"There comes a time when even the best advocates need a day off."

Having just completed the "On Holiday!" carnival, Andrea puts together "10 Things to do Differently when on holiday: Redefining vacationing.” It’s a good compilation gleaned from the last carnival and life experience. I’m ready for another vacation – where to, Andrea?

Food connoisseur Bridget Houlihan gives Top Ten advice on wheelchair friendly dining out. Did you know that wine bars and sports bars have lower tables that tend to work better for wheelchairs? Now that I am 21, I’ll have to check that out!

There’s still time for some summer reading. Jennifer Justice at Pedestrian Hostile puts together "Top Ten Disability Lit Titles", from Sulah to Cuckoo to A Christmas Memory to Jane Eyre.

Along the same vein, Penny Richards at Disability Studies, Temple U, shares "Ten Disabled Characters" from novels on her bookshelves. She gives a detailed description of the characters and how they fit into the story lines from logging camps to love and romance to music to wise parenting. Sounds like you have quite a library, Penny!

"Inclusion Mishap #9: Due to a faulty intercom, Mrs. Snippett thought the principl said, 'You have a new student coming to your classroom. He has disabilities. Do your best to elude him."

Laugh, laugh, and laugh some more.

“You know the hardest thing about having cerebral palsy and being a woman? It’s plucking your eyebrows. That’s how I originally got pierced ears.” Ouch blogger, Dave Hingsburger shares his favorite disability quotes.

Shiva at Biodiverse Resistance lists the "Top 10 Unintentional Anthems": “I Don’t Want Nobody to Give Me Nothing” and “Why?” and “Stepping Out of Line” are a few of the selections.

Also for the musically inclined, Ruth at Wheelie Catholic will have you singing along with hot tunes and classics, “I Left My Crutch in San Francisco” and “Quads Just Want to Have Fun” and “You are the Guide Dog of my Life.”

Do you know why “Normal People” wish they were disabled? Steve Kuusisto at Planet of the Blind has the answers. I hadn’t fully realized how jealous "they" were of my special powers, similarity to the Pope, and sneakiness. Thanks, Steve – this is good stuff to know..

Enough said.

Dream Mom reflects on the life lessons learned from having a child with a disability, “he taught me that children with disabilities are not children to be afraid of, but rather children to celebrate.”

Kristina Chew from Autism Vox shares the ways that she and her son Charlie are the same. Be sure to check out the comments as her readers then list the ways that they are the same as someone they love. It’s a great read – “We like school and are not happy if we miss days” and “We both like potato chips and chocolate (but not together)” and “We both love going to the beach.”

And the Number One disability theme is ….



What’s the big deal? Disability is normal. And, besides, being normal is overrated.

With help from Liz Spikol of The Trouble with Spikol it should be easy to see the arbitrariness of, ambiguity of, and disservice of labels after labels after labels in "Time is on our side".

And, Connie Kuusisto shares “My Husband is Blind. Top Ten Questions I’m Asked.” “He always looks so good. Do you pick out his clothes?” and “Does he know what you look like?” and “Shall I trim his eyebrows?” Well, Connie, don’t keep us in suspense, does Steve want his eyebrows trimmed?

Thanks for all who submitted wonderful posts for this carnival. Let me know if any of the links aren't working right. If you can't get enough Top Ten lists, check out "Ouch Top Ten". Always fun stuff there.

UPDATE: Late entry from Goldfish that fits in maybe #10, or #9, or #7 or a few places I guess. "My Top Eleven Things I Wish Someone Had Told Me About Chronic Illness Eleven Years Ago..." is chock full of lessons learned about living fully, such as "You are not a medical condition" and "Nobody is really going to understand what you are going through." Check it out!
One more: Over at Twinkle Little Star, Lisa lists "The Ten Most Litigous Comments Made to Me in Job Interviews." "Without my glasses, I can't see a thing. And I know I couldn't teach kids without my glasses. I just don't see how it's possible." Incredible!

The next carnival will be hosted by Reimer Reason on September 13, with entries due by September 10. Posts can be submitted via the carnival site. Update - Penny says the theme is "Resilience".

On a very serious note, two stories that we all need to be made aware of:
The tragic death of Ruben Navarro, allegedly killed by his doctor, and Utah Medicaid will no longer be paying for wheelchairs to be used outside of the home.

The pictures for this carnival all come from Dan Wilkins at The Nth Degree. If you've never checked out his site, head on over - he's got buttons, bumper stickers, and t shirts, and lots of disability culture writing.

Thanks to my mom for putting together the Disability Blog Carnival logo with Dan Wilkins Ramp Minds picture, and for putting the "numbers" on all of The Nth Degree artwork.

Descriptions of pictures: Carnival Logo: A guy with a rather absent look in his eyes has a wheelchair ramp switchbacking up to his head. He is wearing a black hat which is flipped open and several people (one in a wheelchair, one with a cane) are falling into his head. Dan Wilkins' title is Ramp Minds. "Ramp your mind at the Disability Blog Carnival" is added across the ramp. Picture number 10: a dark green t shirt with the quote, "Adapt or Perish" and a picture of the progression of humans from the chimp to the primitive man to upright man and finally to the person in a wheelchair. A purple "10" has been added in the lower right corner. Dog pin: a dark green pin with a dog pawprint and "Meet me after work for some heavy petting. Woof!" Picture number 9: a white t shirt with the words "Barrier Removal Team" written in red around a circle crossing out stairs and a red number 9 added in the lower right corner. Picture number 8: a black t shirt with bright pink lettering, "Piss on Pity" and a bright pink number 8. Picture number 7: a picture of the front and back of a black t shirt. The front shows a crossed out circle with boxes in the middle and the words "no boxes" underneath. On the back is written, "see the whole kid". A lime green number 7 has been added. Picture number 6: a beige rectangular pin with red lettering, "Feisty and non-compliant". A yellow 6 has been added. Picture number 5: a brown t shirt with white lettering, "Your attitude just might be my biggest barrier". A blue 5 has been added. Picture number 4: a black t shirt with white lettering, "There comes a time when even the best advocates need a day off." There is a picture of a fellow in a wheelchair, hair sticking up and thumbing his nose. A white number 4 has been added. Picture number 3: a white t shirt with a black, gray and white Michael Giangreco cartoon. The picture shows an adult woman (presumably Mrs. Snippett) peaking around a corner to see child in a wheelchair further down the hall. The caption reads, "Inclusion mishap #9: Due to a faulty intercom, Mrs. Snippett thought the principal said, "You have a new student coming to your classroom. He has disabilities. Do your best to elude him." A brown number 3 has been added. Picture number 2: A brown t shirt with white lettering, "I AM. Therefore, I matter." An orange number 2 has been added. Picture number 1: A brown t shirt with white lettering, "Severely normal". An aqua number 1 has been added.

Ruben Navarro

I have blogged before about the treatment of people with disabilities as less than human. But never murder.

I hope the horrific story of Ruben Navarro, the young man whose death was allegedly hastened by a physician, has caught your attention -- but it may not have since it has been minimally covered in the media. The local news station covered it here, but there doesn't seem to be much other coverage. According to the news station, a transplant surgeon is "facing three separate felony charges in connection with the death" of the young man.

The tragedy is thoroughly covered on "Big Noise, A Blog about Equality, Freedom, and Justice". There are quite a few links to details of the story and to the actual complaint filed by Ruben's mother. Ruben Navarro was a young man with a disability who was institutionalized when his parents could no longer care for him. Within 5 months he was dead, seemingly murdered by a doctor who wanted quicken his death and harvest his organs for transplantation.

Please check the link and learn the sad horrible details.

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.

Come to the Carnival!

Go to Andrea’s Buzzing About and check out the latest disability blog carnival! The theme for this one is "ON HOLIDAY!" - a fun theme for the summertime. There's sights, sounds, and even....food!

The next disability blog carnival will be right here in two weeks, on Thursday, August 23. The theme will be “Top Ten Lists” a la David Letterman and BBC Ouch Magazine.

You can make a Top Ten list about anything you want; any topic, any style is fair game - the Top Ten moments of the Disability Rights Movement, Top Ten reasons you enjoy blogging, Top Ten funniest questions you've been asked, Top Ten pieces of advice for some unsuspecting person. Your entry can be serious or humorous. Ouch’s lists may get your creative juices flowing. Here's one I wrote a few months back.

Everyone is welcome - I hope you'll write your own list and send it to me at the carnival site by Monday, August 20, or via my email (in my profile).

I look forward to reading your lists. It should be a fun way to closeout this summer of carnivals on borders, laughter, carnival and a baby, sex, and holiday!

“…not this separate category of human beings”

Fifty years ago, babies born with developmental disabilities were routinely placed in institutions by their families under the direction of their family doctors. Health care professionals often advised families to forget the child, to have other children, and move on with their lives. It’s an appalling time in our history – babies and young children routinely abandoned and forgotten.

I think it’s important that we recognize and remember this cruel part of our history. Kay Olson from the Gimp Parade says,

“My personal thought on what happened 40+ years ago is that it was a tragedy for whole families and has undoubtedly had a lasting impact on how we view developmentally disabled people today. That is, we're still living with the legacy of those folks being segregated, made invisible, and devalued. It has impacted how we view developmental disability and the way we think of difference - we have all been taught implicitly by this history that people who are intellectually or developmentally different do not belong among us because they're dangerous, completely incompetent and lack any ability to contribute to society.”

While I was away last week, CNN covered the story of one man’s search for his sister. Jeff Daly made a documentary, “Where’s Molly?” in which he talks candidly about what it was like to be a 6 year old and have his sister sent away, rarely spoken of and advised to be forgotten. CNN shows a clip of the documentary and has an excellent article on Jeff’s and Molly’s experiences.

Kay’s words above are in a CNN blog that she wrote on this topic. She writes about he challenges of accurate diagnosis and the even greater challenges of predicting potential.

More from Kay on how the line between “us” and “them” is not so solid and clear cut:

“I think the main thing that nondisabled people don't necessarily know or understand is that developmentally disabled people are not this separate category of human beings. People tend to think, "We can do things. They cannot." And there's no line like that dividing all of us. There are shades of ability, varying talents that surface in surprising places. This is true for physical disabilities as well. Most of us, in the course of our lives, discover we have abilities or affinities for some things and lack talent elsewhere, so this idea that a certain class of people lack value or the ability to contribute inevitably underestimates and wastes a lot of human potential.”

I think it’s important that Jeff and Molly Daly’s story be heard. We cannot move forward until we acknowledge where we have come from. Jeff Daly is now working to reunite families affected by this tragedy. There is a national registry, called The National Find Families Registry, to help families affected by institutionalization to find each other.

Thanks to Elizabeth Cohen and Jennifer Pifer of CNN for bringing this important issue to the public’s attention. So often, it feels like the media’s stories about disabilities are superficial and artificial, “feel good” stories that are designed to entertain or “inspire” those without disabilities; stories that maintain difference, segregation, and the status quo. This is a real story with important ramifications, things to contemplate and learn, and also with actions to be taken.

Lastly, I have to say how much I admire Kay Olson’s style of advocacy. Her approach is thoughtful, reflective and encourages open dialogue. She is thought provoking and assertive without being hurtful or condescending. Kay is the quintessential advocate. I learn a lot from you, Kay - Thanks!