People Would Rather Get Cancer Than Be Like Me

“     Ellie’s words are a sledgehammer blow to my chest. We’ve shared homework assignments, secret nicknames, jokes, and drunken, laughing nights. Do they

really think I live every day in darkness and suffering? Do they think I’m faking my happiness, my love of life?”

“I want my sisters to understand that being blind isn’t the apocalypse.

Researching cures for blindness is all well and good, but it can’t happen at the expense of our dignity and our truth.”

“I do what society has trained women, especially disabled women, to do: assume that the

fault lies with how I raised the issue, not the response of those in power. The world may think blind people live in eternal darkness and suffering, but

ironically, it wants to see happy, nonthreatening, nonchallenging blind people.”

How do you cope when a member of your chosen community makes a speech demeaning members of another beloved community? On this week’s post, Sophie Trist writes about the experience of attending a sorority function where one of her Greek sisters spoke about the imperative to cure blindness as part of the sorority’s philanthropy. It can be hard to know how to cope, and even harder to know if you have done the right thing, or even if you can continue to hold the same level of trust after such a microaggression.

People Would Rather Get Cancer Than Be Like Mehttps://spreadsecondstories.org/sophie-trist/?fbclid=IwAR2bq9UQrX82eB6MQ6vvx1v7O2m2aBZL_4VlkeRi8sXgeVcaBSCSYBMjL4M

New Year, New Partnerships

Happy New Year to all my Disability Wisdom blog readers!

For nearly four years, I have aimed to offer information, inspiration and reflection through my blog. I genuinely appreciate the thousands of individuals who took the time to read, share, and comment upon the material. It means a lot!

It has always been my intention to feature multiple disabled voices here on the blog. This next quarter of 2021, I expect to be busier with consulting work than I have been in the past. So, I will be making more space for content from others with diverse lived disability experiences.

Toward this goal, while you will still see a post on the first, third and fifth Fridays of each month, I will be partnering with the Peaces of Me Foundation and sharing some of their writings with you. Peaces of Me is an innovative new nonprofit that works to eliminate stigma associated with disability, physical difference, and chronic illness by providing resources and connections to individuals/families and appropriate training to professionals in these spheres. I encourage you to check out their website and consider getting involved with their important work.

Further, as always, I welcome guest post contributions from people with lived disability experience, and I can pay a small honorarium for your contribution. For more details, please email me at

arielle@disabilitywisdom.com

Best wishes for a happier, healthier New Year!

Rudolph: A Tale of Disability Justice, or Oppression?

Even as a Jewish kid, I always liked the story of Rudolph the Red-Nosed Reindeer. Each year, we ponder the life of one creature who was set apart from his peers by a highly visible difference, a lone red nose. It’s a tale of coping at first with exclusion (“They wouldn’t let poor Rudolph join in any reindeer games)” followed by vindication when Santa realized that Rudolph’s red nose was actually an asset for his team. At that point, Rudolph was not only included, but celebrated as a valued leader who “will go down in history” forever.

The tale carries obvious motifs that are relevant to the disability experience. Many of us have risen from exclusion to success and celebration when others in power recognized the gifts that we bring, not just despite our differences, but because of them.

However, I’ve recently seen a critique of Rudolph’s tale that is worth considering. To some disability justice advocates, Rudolph was only successful because he was productive. His red nose provided the team with an advantage in efficiently delivering presents. If Rudolph had carried some other visible difference that did not advantage the team, would he still have received love and appreciation from the other reindeer? What if it hadn’t been a foggy night and the shine of his nose had not been necessary to advance the team’s mission?

When we talk about inclusion, we often focus on workplace inclusion. We like to extol the benefits of hiring employees with disabilities, who despite appearances, end up being loyal, dependable, highly generative employees with special gifts for problem-solving and morale-building. It can be tempting to focus our attentions on the “super-disabled” athletes or high academic performers who shatter our expectations for what disability is about. But in the midst of this, the “average” disabled person can be overlooked. We might unintentionally devalue the life of the disabled person who cannot hold a conventional job, or one who doesn’t appear to be overcoming their disability hard enough. Everyone brings something good to the table, whether or not that thing is valued in our capitalistic system.

During this most unusual holiday season, let’s consider how we can truly appreciate every person we encounter, regardless of what we think they will be able to contribute in the conventional sense. Let us strive toward a world where all human beings are equally valued, not despite our differences but because of them. Best wishes for a warm, peaceful holiday season and a joyful transition into 2021.

Hearing Faces: Reading Emojis While Blind

A few months ago, I upgraded the screen reader on my PC. I now have access to the full landscape of emojis that everyone seems to be using these days, in texts, emails, and on social media. Someone has apparently written a library of descriptions to accompany each emoji, which are programmed into the dictionaries for the screen readers I use on my PC and my iPhone.

Don’t get me wrong, I appreciate having full access to these symbols. But it’s interesting to consider how my experience, listening to emoji descriptions being read aloud, must be so different from how they appear to a sighted reader. Especially since I’ve never seen a face in my life.

So, I have a few questions about these emoji things. (Note: I don’t really expect answers to these questions. I’m mainly posing them for humorous purposes, though it might give you an insight into how a totally-blind-from-birth person processes these things). Here are my questions:

*There’s one called “face with tears of joy.” I’ve heard it used in both happy and sad contexts. So is this a happy face or a sad face? And, how does it differ from “crying face” or “loudly crying face?”

*I hear lots of smiling faces. Some of them have smiling eyes. How do eyes smile?

*People use red hearts, blue hearts, purple hearts, growing hearts, beating hearts, and sparkling hearts. Which heart is the best one?

*What’s a “thinking face” exactly? How about a “persevering face?”

*There’s a face without mouth emoji. What’s up with that one? Do I even want to ask?

*Why do some people use the same emoji over and over? When my phone says “face with open mouth vomiting” eight times in a row, is that like eight times as gross as just the one? And, who’s going to clean up all that vomit?

People with Rare Diseases Need Better Social Support [Repost]

“There are more than 7,000 different rare disorders. Combined, 1 in 10 Americans has a rare disorder,

so the experience of rare is actually common.”

Although the experience of rare may be common, it can also be lonely to know few others who look, feel, or experience life like we do. Researchers at Oregon State University found that, for people with rare disorders, emotional support and social belonging are more important for happiness than tangible supports. They also found that the link between social support and happiness holds up regardless of how much stress people are feeling in their lives.

Read About The Study Here