Next stop on the carnival!

The 3rd Disability Blog Carnival will be here on Thursday, November 9. Entries are due Monday, November 6. The November 9 theme for the carnival is spirituality, though all stories relating to disability are welcome.

By spirituality, I mean how have your experiences living with disability shaped you spiritually? I'm defining spirituality very broadly, not necessarily religious or nonreligious - thoughts on God, humanity, love, relationships, beauty, the value of a life, meanings and purposes of life, etc., etc., etc.

Have your experiences with disability increased your connection with God? How does suffering and pain coexist with a belief in God? Are you welcome and respected at your place of worship? Are accommodations appropriate? How could they be better?

Have your experiences led you to doubt God's existence? How so? Is there a source of life’s meaning and value?

How have vulnerabilities and challenges in the disability minority shaped your philosophy of life? It seems to me living with disability encourages one to see a connection with and compassion for other oppressed or struggling minorities as well as a deep connection with humanity in general. Agree? Disagree?

What is beauty?

It seems to me people with disabilities are less afraid to ask deep questions, less likely to just accept societal attitudes, ways and traditions. Sometimes we’re forced to ask questions because of the choices we make on a regular basis. Sometimes we ask questions because we are not satisfied with society's answers and excuses. Sometimes we simply see the absurdities of our world.

All viewpoints are welcome, and I look forward to exploring this issue with you. Send submissions to the carnival site or to my e-mail. Deadline Monday, November 6.

It's Carnival Day again!

The 2nd Disability Blog Carnival can be found at The Gimp Parade . This carnival is a collection of writings about "The Cure". Blue, the author of The Gimp Parade, shares her perspective and wonderings about a cure in this very interesting entry two weeks ago. I hope you'll check out both links!

To cure or not to cure, that is the question.

My first interviewee, “Ashley,” discussed her perspective on a cure for her learning disability. Ashley said she would only accept a cure if it were on her terms. What society calls rigidity and stubbornness, Ashley calls discipline and focus. From her challenges, Ashley has learned patience and perseverance. She feels aspects of her learning disability have helped her become skilled at math, science, martial arts, and fitness. Ashley wonders if a one-size-fits-all cure of her learning disability could rid her of some of her very best qualities.

Many people who have made valuable contributions in society are thought to have had learning disabilities. Would Leonardo da Vinci, Pablo Picasso, Albert Einstein, and Winston Churchill have wished there had been a cure? What about Jay Leno and Robin Williams? Would these and other people with learning disabilities share the same concerns about a cure as Ashley? Would the unique talents and gifts of these scientific and creative individuals be lost if their disabilities were cured?

I wonder how Franklin Delano Roosevelt would have been a different leader had he not had the perspective and skills learned from dealing with polio. How would Stevie Wonder and Ray Charles be different musicians if they were sighted? How would Beethoven's 9th Symphony be different if he had not lost his hearing?

These are interesting questions to think about. We, as a society, are quick to point out the negatives of a person's disability; with a little effort, strengths can be seen too. Disability is a natural part of human diversity and should be respected and treasured.

This is a piece of artwork I like. It’s called Ramp Minds, by Dan Wilkins at The nth Degree.

The Label Jars picture comes from The Center on Human Policy

Control

I interviewed “Brian”, a gentle man with a very quick wit. Brian told a story that highlights the issue of control. I think this is an issue that is often faced by people with disabilities.

In his 24 years, Brian has needed 37 surgeries to repair the life-sustaining shunt that was first placed in his brain as a baby. He said a shunt malfunction can occur at any time and requires immediate surgery for repair. Brian starts to realize his shunt is not working when he feels moodiness and lethargy. After a while he develops a severe headache, nausea, and a sensitivity to bright lights.

Brian must interrupt his life, head to the hospital, and have surgery. He is grateful to have a consistent primary surgeon for each surgery. However, Brian faces new resident doctors, fellow doctors, nurses and anesthesiologists each time. These healthcare providers play a pivotal role in the surgery’s outcome and Brian's comfort, yet they have no personal experience with his complex needs. It is a terrible combination: Brian’s shunt malfunction is unpredictable, he feels miserable, and he has changing healthcare providers. At one time, Brian intensely dreaded this experience.

With the help of his family and a psychologist, Brian realized he needed to gain control over this challenge. He thought of his needs during the surgical experience - dim lights in the operating room, IV anesthesia, extra warmth, and a calm, light mood, to name a few. Brian made a written list explaining these needs, which he keeps ready for hospitalizations. His instructions have been consistently followed by his healthcare providers. While Brian is not able to avoid the shunt repair surgery, he is able to maximize his control and make the experience as manageable as possible.

The issue of autonomy is huge one. Society is designed for those with able bodies. Buildings have stairs. Crosswalks have signs that only those with sharp vision can read. School programs, recreational activities, and community events often are one-size-fits-all. Health care providers learn textbook solutions to “problems", often overlooking the person. This societal design forces people who don't fit the cookie-cutter mold to be dependent on others to bridge the gap between society’s attitudes and our individualities. It is necessary to depend on a wide range of people - doctors, teachers, personal assistants, educational assistants, family, friends and neighbors every day. From eating, bathing and going to the bathroom; to be being pulled out of the classroom for therapy; to waiting for the special bus, people with disabilities depend on assistance for a variety of things. And when dependence comes in, autonomy and control go out.

Even under the best of circumstances - a willing, respectful, capable helper and a clearly defined task - it is difficult to rely on other people's help. In a classroom lecture, my assistants took notes for me, writing down the material they thought important in the style the thought best. In addition to the loss of personal preference, there's also a loss of control over timing; I have to wait to go the bathroom, to get a snack, to get my laptop computer. And when the circumstances aren't the best - an unwilling, disrespectful, incapable, helper along with an ambiguous task - autonomy and control can really suffer.

This issue of control is faced every day. When to be assertive? When to be aggressive? When to go with the flow? When to just give in?

I admire Brian's courage and creativity taking back control in a very difficult situation. By identifying his needs and preferences and sharing them with those he was dependent on, he makes a major change in his life.

Leaving a comment

I really appreciate you sharing your comments, insights, and experiences. If you are new to blogging and having trouble leaving a comment, here are some step by step directions that my mom wrote up.

Contrary to what it appears, you do NOT have to create a blog just to leave a comment.

1. Click on the comment link by the post on which you want to leave a comment.

2. Decide if you want to create a "blogger identity" so that you can regularly and quickly sign in with your name and password (no other information is required), or if you want to sign in "anonymous".

3. If you decide to create a blogger identity, then do that first, before you write your comment. Scroll down to "No Blogger account. Sign up here." You'll be linked to another page where you choose a user name (what you sign in with, no one else sees it); a password: a display name (this is what shows up when you write your comment); and your email address (by the way, they don't send SPAM). Then click "continue". Here's where the confusion comes in - the next page is for setting up a blog, which you don't have to do. Just close the window, reenter the blog, and now you can leave a comment. Each time you return to this blog or any blog, you write your comment, sign in on the same page with your user name and password, and that's it! A small hassle at first, but then you are set.

4. If you decide not to create a blogger identity, you can still leave a comment. Go ahead and write your comment, then click the "anonymous" circle. You can identify yourself in your comment box.

5. All comments require you to fill in the "word verification" box to reduce the chances of spam comments.

Hope this helps! Thanks again!

Carnival Day!

It's the first disability blog carnival day!

Check out the submissions over at Disability Studies, Temple U. Lots of interesting links. I can't wait to read them!

Relationships

I’ve been thinking about the connection between disability and friendship.

What makes a friend? What do I look for in a friendship? What do I like about my friends?

Well…

I look for people who like to think “outside the box” and challenge the status quo. Why do things the way they’ve always been done, just because they’ve always been done that way? People who want to make the world a better place excite me.

I enjoy people who make music. Musicians are fun people who know how to have a good time.

I enjoy watching sports and talking about sports with friends. Go Bears!

I enjoy exploring nature with friends – nothing like a hike in the woods on a fall day.

I look for people with a positive life attitude – a positive, realistic view of the world. Not sappy or phony – but a “taking the good with the bad” attitude and honestly realizing that there is so much good.

I look for people who like to learn and grow; people who are humble enough to recognize that they don’t know all the answers and who like to have challenging conversations.

I enjoy people who like to play. A game of poker with my buddies makes a fun Friday evening. And, I finally have a fantasy football team in first place!

I look for people who work hard to fulfill their passion.

I like people with a sense of humor. Laughing is fun. Ever listen to “Wait, Wait Don’t Tell Me?”


Notice that “disability” is not on my list. Some of my friends have disabilities, some don't. It's not a factor.

But much of society has it on their list.

Some people, both peers and adults, have avoided me because of my “outside” – perhaps my drooling, being in a wheelchair, limited use of my hands. Others, perhaps deluding themselves into thinking they were “open-minded”, talked down to me or were my “friend” only when convenient for them.

A visible disability presents superficial “differences”. But, it’s the inside qualities that matter in real friendships. We can share so much in common with each other, but we need to get to know what’s on the inside to find out. Seeing a person simply as his or her disability is a roadblock to a real relationship, and, sadly, both people end up missing out.