Nickie Coby (puppybraille) wrote,
Nickie Coby

A Journey toward Accessibility Begins with a Few Honest Stories

Not quite a year ago, I posted this plea to
Share your stories about medication identification
and I'm extremely happy to tell all of you that this week, I got an email from
The American Foundation of the Blind
the email included a link to the
Access to Drug Labels Survey Report
around 100 people spoke in this survey and the report contains a lot of information about problems caused by miss-understandings of medication labels and the solutions blind people are using every day to try to adapt their medication labels.

This kind of report is important because now that we have these types of stories available and publicized without breaking confidentiality or annonymity, we have resources to use in advocating for ourselves. I think this report should be read by every doctor, nurse, social worker, pharmacist, physical therapist or other person who works with people who are blind or people who have illnesses which might impact their vision.

I also need to admit that I hadn't really thought about people who might have illnesses which could impact their vision. The report gives the example of someone with
Multiple Sclerosis
without wanting to reveal where I do my internship, I will say that I will likely have clients with MS, once I have gotten through some orientation materials and gotten more comfortable with my role. I'm embarrassed to say this, but I never connected the dots that MS can cause vision problems, as does diabetes and probably other illnesses which have impacts on the nervous system. I've lost most of my light and color perception since my RSDS/CRPS got worse, so when you think about it, all of these chronic illnesses can cause vision problemos. Basically, I'm not alone. I'm not alone dealing with pain and blindness, there are probably people who have chronic pain or illness who could benefit from the knowledge those who are blind have as we can learn from them about the struggles they have, the adaptationss they've made and the shared impact of chronic illnesses and disabilities.

Other than sending in my story when AFB made the request for submissions, I am not officially connected with what AFB is doing. I don't call the shots (no punn intended). But I've renewed my desire to think about how chronic illness and blindness impact each other. And of course, to educate and advocate for more accessible ways of managing our medications and conditions. And in case someone from AFB reads this post, please keep up the excellent work and I'd be glad to help further if I can!
Tags: accessibility, advocacy, blindness, braille, chronic illness, chronic pain, dialogues, disability related, health, internship, politics, reading illnesses, rsd sucks, social work, technology related

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