When I started out to write this, I was focused on reporting about disability activism, which has impressed me during the ACA protests. As I cut and pasted bits of information from online, I found my focus subtly changing. I considered the words of those who have become very strong advocates for the disabled, and who have called people out for ableism, and compared that to my own attitude. So I am going to describe several websites where people speak out in order to improve how the disabled are seen and dealt with, and also other sites besides this group where disabled can find community. But I also will bring up some questions that might be hot topics, as I explore how my attitudes are shifting as I live with a disability.
As I wrote previously in A History of Accessibility, there has been disability activism for decades in the US, and it is primarily responsible for the strides in accessibility that have been made here. And of course we all know that quite a number of those regulations (not to mention medical care) are greatly at risk with the current White House administration. Since the last accessibility rules were written, the Internet has become one of the main communication tools, and although I am not on Facebook (maybe someone else can comment on this), I have found quite an active community on Twitter. For example there’s Heather, with a really good question:
[Besame writes The Women’s March national organizing team included Mia Ives-Rublee (@SeeMiaRoll), founder of the Disability Caucus for the March. She helped coordinate services for over 40,000 people with disabilities at the March and worked with Co-Chairs to ensure disabled people were fully involved. She also provided guidance and advice to other actions like the Climate, Science, and Education marches. I heard her speak at a Netroots Nation panel: How Disability Can Save the Progressive Movement.]
And then there’s Carly and Princess:
These tweets are dealing with less obvious issues and also provide several hashtag links for anyone who wants to look at tweets about the disability community.
I especially resonated with the comment that not all disabilities are visible – my abilities shift with my level of pain and muscle weakness, as I have severe arthritis in my spine and two artificial hips, neither of which seem to be fully restored. Some days I can walk almost normally, other days I must lean heavily on a cane, and in situations where I can’t count on a place to sit, I use my walker. I have been surprised and sometimes disheartened by the various responses. It is nice to have people treat me kindly, making way as they see me hobble by with my walker, but also disconcerting to see the pity on their face. When I am cane-less, I seem to be totally invisible (as a middle-aged woman), but at the same time there is no subtle distancing like I feel when I have the walker. This gives me a slight window into how someone with a wheelchair might feel all the time. It also challenges me with the question about whether I am identifying with the disability community or still pretending this is a temporary setback. It has pushed me to look at my own attitudes toward disability and the disabled, and to catch myself when I cross the line into ableism. It’s not an easy dialogue to have with myself.
According to Wikipedia . . .
...the social model of disability suggests disability is caused by the way society is organized, rather than by a person’s impairment. This model suggests barriers in society are created by ableism. When barriers are removed, people with disabilities can be independent and equal in society.
There are three main types of barriers:[3]
- Attitudinal barriers: are created by people who see only disability when associating with people with disabilities in some way. These attitudinal barriers can be witnessed through bullying, discrimination, and fear. These barriers include low expectations of people with disabilities. These barriers contribute to all other barriers.[3][4][5] Attitudes towards people with disabilities in low and middle-income countries can be even more extreme.[6]
- Environmental barriers: inaccessible environments, natural or built, create disability by creating barriers to inclusion.
- Institutional barriers: include many laws, policies, practices, or strategies that discriminate against people with disabilities. For example, a study of five Southeast Asian countries found that electoral laws do not specially protect the political rights of persons with disabilities, while ‘some banks do not allow visually disabled people to open accounts, and HIV testing centers often refuse to accept sign language interpreters due to confidentiality policies’.[7] Restrictive laws exist in some countries, particularly affecting people with intellectual or psychosocial disabilities.[8]
Other barriers include: internalized barriers (low expectations of people with disabilities can undermine their confidence and aspirations), inadequate data and statistics, lack of participation and consultation of disabled people.
This is a profoundly challenging statement – that it’s not individual people who are disabled, but the society that is structured in a way to leave some people out. And since I’ve been doing a lot of research on other types of societies for my fiction writing, I can certainly see how having different societal goals, or a different pace of life, or different levels of technology all contribute to whether or not someone is considered disabled. And it seems to me our culture is somewhat split (I don’t say schizophrenic because that is ableism) on this: on the one hand, we have been able to technologically provide access that is unavailable in many societies, but on the other hand we seem to have a much higher social barrier, labeling many more people disabled. I keep telling people that life here feels like a really crazy game of Simon Says, moving faster and faster and more erratic all the time, which of course leaves out more and more people.
As I dictated that last sentence (I can no longer type whole articles due to arthritis), I struggled with that word “crazy” – my research for this post made me very aware of how our words often discriminate or add to the negative image of those who are disabled.
For example, Laura (@painandcats) puts up periodic tweets pointing out how we use words:
I know a lot of people are uncomfortable about changing how they speak (and I struggle with that too) and so that is one of the “hot topic questions”: How far/where does society need to adjust versus how far/where the individual have to adjust? I am awed by the courage of many who speak out and remind us that our careless words and actions contribute to or detract from the self-esteem of others, but I also struggle when an otherwise well intentioned person who could be an ally is harshly chastised because of a careless word.
An experience I had when I worked at the YWCA might exemplify this. We of course had sensitivity training, since the Y dealt with so many communities, and during much of that training I agreed, but when I questioned one of their scenarios (that a 400 pound woman who preferred the muscled male lifeguard to the female lifeguard in giving assistance getting into the pool was being sexist), their explanation left me feeling defensive and I stepped back, no longer feeling allied with their cause. FWIW, I still don’t think it’s wrong for someone who’s aware of their special needs to be wanting the best qualified person to assist them. So I keep asking myself this question and I keep finding different answers according to the situation – what is ableism and how crucial is it to our daily struggle to live with disability?
One thing that seems to have a profound impact on the ability to cope with a disability is finding a community of others who are also dealing with it. Online, there are professional or semi-professional websites such as these.
Inspire
"The first and most important benefit of Inspire is instantaneous: realizing that you are not alone with your diagnosis. No matter how remote in the world you may feel or how isolating your diagnosis, Inspire is that corner café or pub where everyone pulls up a chair to meet over shared concerns and learn something new."
The Mighty
Billions of people are facing serious health conditions — including many of us at The Mighty. It’s so easy to feel like we are facing these challenges alone. The truth is, we are all facing disability, disease and mental illness together.
But when we look online for help, all we often find is medical information. We want a community, too. That’s what The Mighty is building.
We publish real stories by real people facing real challenges. We are building a brand and a community around them. Having a disability or disease doesn’t have to be isolating. That’s why The Mighty exists.
We’re creating a safe platform for our community to tell their stories, connect with others and raise support for the causes they believe in. We are stronger when we face adversity together, and we know it. We’ve also partnered with over 200 nonprofit allies to deliver their excellent resources to our community.
[Besame notes The Mighty is shunned by some disabled people because they don’t pay most of their writers and have a bad reputation for how they deal with autistic activists. There’s quite a bit of profit in online websites that focus on disability and illness these days. Some, such as The Mighty, partner with organizations along with commercial ads. Another website, Patients Like Me, offers databases for people’s symptom, treatment and other data for patient tracking and personal use. But then, with permission, sell the data to pharmaceutical and other researchers. Much like Facebook, the users are the commodity not the clients. But there’s no doubt that the awareness and help offered by many of the articles people write for The Mighty are important.]
My Disability Matters
My Disability Matters (MDM) has been created to improve the lives of people who live with disability.
Living with disability can be lonely and very challenging. Despite over ONE BILLION people worldwide living with disability, many do not have access to the information and resources they need that could improve their lives. Many do not feel a sense of community.
For Founder Dale Reardon, his motivation starts from a personal perspective.
I have been a blind disabled person for almost 30 years, since I was 17. I personally understand many, not all of course, of the struggles and discrimination that disabled people face. I seek to help empower disabled people and give them a voice. MDM provides a place for disabled people to find information, ask advice, network and debate issues around disability. They will find their community.”
MDM provides valuable online resources for the disability community, with more planned for the future.
- The News website publishes news and opinion articles on disability issues and disability rights.
- The community site, the MDM Club, is a social network. It is a place for members to have open discussions of disability issues, to meet others affected by disability from across the world and find peer support.
And of course the various individual blogs, of which there are so many I will only mention one for now: Every Life Is Equal.
The best explanation of my blog can be found in its title: EVERY LIFE IS EQUAL. If you embrace this essential truth then hopefully, you will enjoy your stay.
My writing focuses on developmental disabilities and other intellectual and physical challenges.
There are also advocacy videos, including this intriguing one that talks about how important it is that web pages are accessible – something that I haven’t really thought of besides complaining about how small the type is until I figured out how to enlarge it on my screen:
An advocate for Universal Design for Learning (UDL)- advocacy and conference. (how to design websites to be accessible)
I know I could go on longer, but I don’t want this to be an endless post. Hopefully a few questions have been raised and you will contribute your thoughts and add good resources that you have found.
KOSABILITY IS A VOLUNTEER DIARIST COMMUNITY MEETING THE LAST SUNDAY OF EACH MONTH AT 4PM PT/7PM ET.
WE EMBRACE PEOPLE LIVING WITH DISABILITIES, WHO LOVE SOMEONE WITH A DISABILITY, OR WHO WANT TO KNOW MORE ABOUT THE ISSUES. OUR USE OF "DISABILITY" INCLUDES TEMPORARY AS WELL AS PERMANENT HEALTH/MEDICAL CONDITIONS, AND SMALL, GNAWING PROBLEMS AS WELL AS MAJOR, LIFE-THREATENING ONES.
OUR USE OF "LOVE SOMEONE" EXTENDS TO CHERISHED MEMBERS OF OTHER SPECIES. OUR DISCUSSIONS ARE OPEN THREADS IN THE CONTEXT OF THIS COMMUNITY. FEEL FREE TO COMMENT ON THE DIARY TOPIC, ASK QUESTIONS OF THE DIARIST OR GENERALLY TO EVERYONE, SHARE SOMETHING YOU'VE LEARNED, TELL BAD JOKES, POST PHOTOS, OR RAGE ABOUT YOUR SITUATION. IF YOU ARE INTERESTED IN CONTRIBUTING A DIARY, CONTACT BESAME, WILDERNESS VOICE, STEVEN PARK, OR CATHYM.
|