DisabilityLand

Disabiltityland Cover

In the spring of 2008, New York publisher SelectBooks joined with award-winning educator and author Dr. Alan Brightman to create DisabilityLand, “a groundbreaking volume that examines the landscape of disability from new, intimate and unusual viewpoints.”

DisabilityLand features NIAD artwork on the cover and throughout the book while “Brightman provides a tour through the landscape of disability where common and not-so-common sense co-exist and where people are seen for who they are rather than how they are stereotypically—and often pathetically—portrayed.”

Brightman explains, “kids and adults with disabilities live with, bump into, and wonder about people who’ve typically had little experience with others very different from themselves.” He adds, “I’ve been privileged to be involved in these interactions for many years. I’ve laughed at some, cried at others and was frankly flabbergasted by still others. Put disabled people together with non-disabled people, and all too often the unexpected happens together with the insightful.”

“DisabilityLand does not care about being politically correct. It doesn’t rely on euphemisms or platitudes. Rather, in stunningly frank language it conveys the experiences of disability in a candid and unprecedented way.”

The National Institute of Art & Disabilities (NIAD)

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Debilitating Pain of RA

I just received this comment on an older post, and think that it deserves more visibility – so, I am posting it here to my front page.

Thank you, Janet.  Very well said.

*****

In 2001 I was diagnosed with Chronic Regional Pain Syndrom(CRPS), and two years later I was diagnosed with Rheumatoid Arthritis(RA). Since then I have had many up and downs, surgeries, physical and psychological therapy, medication treatments, and still I don’t always feel that people understand what I am going through.

One day when I was down I wrote the following note and sent it to all my friends and family. I think it helped them understand that even though I may look OK that putting up that front helps me to take my mind off of the pain. I don’t want people to feel sorry for me I just want them to understand that there are days that I can’t be counted on to be my best.

Having a disability doesn’t make you disabled and although I can’t be as active as I used to be, (I always played sports) I always try to do what I still can.

One important thing I have learned is not to judge people by the way the look. I used to complain about people who have handicapped plates when they didn’t look disabled. Now I understand. So here are my thoughts on the “Debilitating Pain of RA”.

Debilitating Pain of RA

Many people don’t realize that we, the people living with Rheumatoid Arthritis(RA), don’t have to be in a wheelchair or use a walker to be disabled, the pain of RA does make you disabled whether it’s physically or emotionally. I realized this one week when my Remicade treatment had diminished from my system and the pain from RA ravaged my body.

I never knew what pain was, I mean real pain. Pain that makes you walk like you’re 100yrs. old, pain that attacks all your joints at once and makes you want to say “I can’t take this anymore!”.

I thought the pain I went through with CRPS was the worst pain I could ever have,(and I guess at the time it was) but that was just one knee, the RA pain went right through many joints in my body.

One day it attacks the knees, then it attacks the shoulders, the wrists, elbows and hands, next the feet, ankles and any joint that is vulnerable.

How can anyone say a person with RA is not disabled? Is it because you can’t see my disability? Or maybe my pain?

The day comes for the treatment and yes it does help the pain go away, but not away completely, it’s still there lying in wait until the medication diminishes from my body, then again pain will rear it’s ugly head then I will be in pain again.

Janet Richards 2008

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NBC The More You Know: Disability Awareness

If all you see is the disability…you might be missing a lot. People with disabilities are just people. – Meredith Vieira, NBC News

“The federal government defines a person with a disability as someone who has a physical or mental impairment that substantially limits one or more “major life activities.” According to the U.S. Census Bureau, about 49.7 million Americans have a disability, which includes people of all ages. About two-thirds of these individuals have a severe disability. People with disabilities represent all races, colors and creeds.”

NBC The More You Know: Disability Awareness

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More Personal Stories Of RA

Another Alice: An Inspiring True Story of a Young Woman’s Battle to Overcome Rheumatoid Arthritis
Alice Peterson

Jodie’s Journey
Colin Thiele

Send Yourself Roses: Thoughts on My Life, Love, and Leading Roles
Kathleen Turner and Gloria Feldt

Many thanks to Jennifer for suggesting these additional books on personal stories of rheumatoid arthritis.

I have created a new page RA & The Arts where I will be keeping track of resources which combine rheumatoid arthritis and the world of art. This link is available on the top navigation bar.

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Survey: Partnership To Enhance Research Related To The Management Of Chronic Disease

Rheumatoid Arthritis Guy just completed this survey! If you are living with chronic disease or are the caregiver of someone living with chronic disease, please help by taking this survey. It only takes about ten minutes, and you can enter a raffle for a $100 Visa gift card.

Advocacy for Patients with Chronic Illness, Inc. and the University of Michigan Center for Managing Chronic Disease have been awarded a grant by the National Institutes of Health (NIH) to study the obstacles facing the chronically ill and caregivers, interventions that do and do not work to surmount those obstacles, and ways in which the work done by the NIH, including research and clinical trials, may be helpful to patients with chronic illnesses. With the help of twelve patients and caregivers, we have drafted a survey which is available online at:

http://chronicdisease.survey.sgizmo.com .

If you have a chronic illness such as Crohn’s disease, ulcerative colitis, rheumatoid arthritis, fibromyalgia, multiple sclerosis, immune deficiency, or other chronic illness or are a caregiver of someone with a chronic illness, are at least 18 years old, and would like to take the survey, please do so. If, for any reason, you are unable to take the survey online, or you would prefer to be interviewed by telephone, or if you have any questions at all about the research, please contact Jennifer Jaff at (860) 674-1370. She will answer any questions you may have, provide more details about the study and arrange for an interviewer to call you to schedule the telephone interview at a time convenient to you. Any services you or the person you care for may receive from Advocacy for Patients will not be affected by your participation or decision to not participate.

Thanks to Lisa at Brass and Ivory and Duncan at Duncan Cross for helping to spread the word about this survey.

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