Several weeks ago, the Invisible Disabilities Association (IDA) was contacted by a young lady, Laurie Cohen, who is a DJ for a college radio station. She wanted to do a PSA (Public Service Announcement) to spread more awareness about debilitating illness and pain and the outreach of IDA.
After connecting with Laurie, we knew we wanted to tell her story. Laurie, 31, has neuropathy in her pelvis. She has been suffering from this permanent condition for 3 years, after she was rear ended in a car accident. She has severe neuropathic pain as well as loss of sensation in her pelvis. The severe pelvic pain prevents her from being able to sit.
Laurie said, “I have a ‘sitting disability;’ I can only lay down or stand up. This disability effects every aspect of my life.”
Here are just a few examples: Laurie has to stand up to get her hair cut, she lays down or stands up to eat meals, she stands up at the movie theater (she recently stood for two hours to see the new Harry Potter film).
Laurie shared. “It is a very tiresome disability and the worst part is that I ‘look’ completely normal so people either don’t understand or think I’m lying when I explain my disability.”
Last spring (2011), Laurie became a community volunteer for her local college radio station, KSCU Santa Clara 103.3 FM – The Underground Sound. According to Laurie, this is one of the only college radio stations that accepts DJ’s who are not students. She does a 1 hour radio show Friday evenings, which she considers a very enjoyable hobby.
Laurie commented, “My other chronic condition is major depression, so as you can imagine being a DJ is quite helpful!”
Laurie’s show is called, Fairyland and she goes by the name, “DJ Fairy.” It is a specialty radio show where she plays 1960′s “flower power” music, which she describes as “Mostly lesser known / obscure artists.” It seems that the college students and her community are thoroughly enjoying her program, because Laurie noted, “I have been getting great feedback about my radio show!”
It sounds like Laurie has really found a wonderful outlet to express her talents and music, as well as finding joy in the journey! Thank you, Laurie for spreading awareness about others living with invisible disabilities!
ARTICLE RESOURCES:
KSCU Santa Clara 103.3 FM – The Underground Sound
PSA for IDA by DJ Fairy on KSCU Santa Clara 103.3 FM
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The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!
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I’m fascinated to read this article – I also have a “sitting disability” and up until now have not found anyone else with the same problem! Mine is caused by different reasons (botched spinal surgery) but the effect is the same – living nearly all my life lying doiwn (I have difficulty standing and walking too).
I would love to be able to contact Laurie so that we can compare notes on how we manage life with such an unusual disability.
Thank you Laurie for sharing your story! I also have sitting disability, although from different reasons. I’m spending most of my life laying down. From research in Norway we have estimated that at least 50,000 people suffer from sitting disability. This from a population of only 5 million people! Some people develops chronic sitting disability, others only temporarily.
It is difficult to be a non-sitter when you live in a sitting society!
Mosken
Laurie, your disability echoes my own. Although the reason for it is different, I too cannot sit and haven’t done so for almost 9 years.
It is indeed an invisible disability and people simply don’t understand or believe us when we tell them what is wrong, as we don’t look disabled!
Thank you for bringing this subject to a wider audience, as the more people who know, the more understanding people are.
Penny
Hello Laurie,
Your story echos that of so many others. I have Chronic Fatigue Syndrome also known as Myalgic Encephalomyelitis. Not many believe that it is a disableing illness with many restrictions and limitations. I believe the only way to get a change in attitudes towards people with chronic illness and disabilities is by educating and sharing our stories, in hope that someone, somewhere will challenge thoes who discriminate against us.
It is difficult to see how this can be done when we are penalised on Income and Support.
I am thankful for your story and the efforts made to shed light on our lives. (I also have a sitting disability due to degenerative disc disease.)
However I am a little discouraged by the lack of comments. Four people have commented since September? I know Mosken (another commenter here) because she hosts a website support group.
I’m not being negative, I’m just saying we (me especially) need to be proactive in helping others become accepted in public and workplaces by spreading the news about this. Find news articles like this, support groups, published studies… and post on Facebook, Twitter and (like me) Google+.
Thanks for the wonderful article.
Hi Rich! We wish more people would comment on these blogs, too! A lot of people do not realize that a person does not have to register and that their email remains private.
However, the great news is that this article was shared 430 times, which is awesome! It was also Tweeted and posted on IDA’s Facebook Page, which got lots of comments, “likes” and shares. Many have connected with Laurie on her Facebook Pages too. Thank you so much for leaving your comment and words of encouragement and support!