What Others are Saying

Back in 2013 the post Imagine That America Had Its Consciousness Raised included the following among its recommendations:

Institutions (meeting places, organizations, "meet people like you" events, etc.) to counteract the social isolation of many disabled people.

An article in Huffington Post, iPhone App Connects People With Cerebral Palsy, introduces an interesting idea: a special-purpose communication app:

The idea for Candor CP materialized when Alexis learned the power of connecting with other people who have CP over social media. ... His main issue is that whatever he posted on existing social media was public, had his name associated with it and would often get viewed by a larger audience than he preferred. ... Candor CP lets users chat with each other anonymously. It encourages open, safe communication about issues that may be too private to talk about on public social media. The sign-up process is simple. You create an account using an email address and a password. You don't have to worry about usernames, avatars, share settings or linking to Facebook, Twitter and other social media sites. When you post a comment, the app assigns an avatar that is unique to each thread. ... Alexis interacts with adolescents and young adults who have CP on his blog. ... While sharing his story, he realized that young adults with CP would benefit from connecting with other people their age who have the same disability. There wasn't a supportive community with people like him years ago.

Perhaps a Let's Talk app, or a You're Not Alone app, for those wrestling with the isolation and stigma of disability, would fit under the What We Can Do tag. Preliminary thinking is that it could have interest group areas (CP, those with Cleft Palate, Little People, etc.). A way for those interested to offer suggestions to the app designers.

On a related topic, Daniel J. Vance has a long-running newspaper column on disability topics. Here's something he said about The Loneliness of the Disabled Person:*

Especially for widowed or single people with any type of disability, the holiday season can become a very lonely stretch, often involving depression. ... People sometimes tell me they don't know anyone that has a disability, but statistically that isn't possible, unless, of course, you were raised by wolves and live alone in the mountains. Perhaps every individual residing in a nursing home, for instance, has a disability.

After they say they don't know anyone, I often ask something like this: So you don't know anyone with dementia, cerebral palsy, dyslexia, severe arthritis, renal failure, chronic illness, multiple sclerosis, an amputation, schizophrenia, lupus, traumatic brain injury, deafness, blindness, cerebral palsy, autism, Down syndrome, an intellectual disability, an ostomy, cleft lip or palate, epilepsy, glaucoma, spina bifida, paralysis, fetal alcohol syndrome, stroke, muscular dystrophy, or hundreds of other disabling conditions, or anyone with a significantly impaired ability to walk, talk, eat, sleep, drive or work?

Recently, I searched online for academic research to back up the claim people with disabilities experience more loneliness year around—not just during the holidays—and actually found too much information to fit into any one column. ...

So people with disabilities, in general, experience more loneliness than the rest of the population, sometimes because of being less verbal or unable to physically get out to meet others or just plain due to having fewer social skills.

Nicole Luongo tells My Cerebral Palsy Story:

My mom took me to the doctor for a follow up visit and expressed her concern. He looked at her straight in the eye and said, “she should not be walking at all. She is a miracle.” Learning to walk without assistance was not easy. First, I wore braces up to my knees. Then, just in time for Kindergarten, I wore full-length hip braces. As you can imagine, the other kids teased me constantly.

Eventually, I learned to walk on my own. Now, as an adult, I am experiencing problems associated with CP and the constant stress on my body. I tire easily when walking. If I walk too much, I can experience back pain. I have problems stepping up curbs with my right leg – something I never had problems doing until five years ago. This continued to be a such a problem that I asked my orthopedist for a cane. I couldn’t bring myself to use it. I could continue to have these problems and more as I age, possibly requiring the use of a wheelchair. I do not want this to happen to me!

Although I work out and try to stay active, my balance and flexibility are poor due to CP and the tightness (spasticity) it causes. Selective Dorsal Rhizotomy (SDR) is the only procedure that can permanently eliminate the tightness in my legs. This surgery will allow me to do things I’ve never even imagined – walk with greater ease and fluidity, have better balance and flexibility – just to name a few. One thing I’d love to do is ride a bike. SDR may make that possible!

Read her blog for the story of her SDR surgery.

Independencechick (read her blog!) exclaims:

Am I saying PWDs and their loved ones should just completely ditch all services meant to help them? That’s not my call. It’s an individual decision you must make based on where you live, what you need, and what you want. What I am saying to you is that I think we’re spending way too much time on programs, and not enough time helping PWDs acclimate to society and feel like a real part of it. Instead of shuffling from service to service, what if PWDs were born into their communities and became community members? And, if programs are absolutely necessary: what if the people running those programs started paying attention to the people they’re trying to serve?

Note that some disabilities don't have services and programs, beneficial or otherwise, particularly when they become adults. Imagine That America Had Its Consciousness Raised


(*) Alan Sillitoe's The Loneliness of the Long Distance Runner is a classic published in 1959