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National Disability Independence Day

July 26, 2023

Disability Pride Month 

     “In 2015, New York City Mayor de Blasio declared July Disability Pride Month in NYC in celebration of the ADA’s 25th Anniversary. Though not yet nationally declared, the disabled community has adopted New York City’s declaration. Disability Pride is a fairly new and radical idea. The Americans with Disabilities Act (ADA) wasn’t enacted until 1990. Let me put this into
perspective. If you are currently 31 years of age or older, you lived in a
world where people with disabilities were unprotected against discrimination
in education, transportation, the workplace, and other areas vital to a good quality of life. Additionally, many people without disabilities still view disabled individuals as lesser humans. Because many people with disabilities are unable to work in the same capacity as their able-bodied counterparts, they are deemed weak and unproductive. In our capitalistic society, this obviously doesn’t bode well. These hostilities and viewpoints are incredibly damaging to the self-esteem and mental health of people with disabilities. Disability Pride is all about reminding ourselves and the rest of the world that we MATTER and have VALUE just the way we are.”
Everything You Need To Know About Disability Pride Month in 2022 (therollingexplorer.com) 

     Disability Pride Flag designed by Ann Magill and updated in 2021 to ensure accessibility, each color represents a different type of disability: physical (red), cognitive and intellectual (yellow), invisible and undiagnosed (white), psychosocial (blue), and sensory (green). The charcoal background symbolizes mourning and rage for the victims of ableist violence and abuse, and the colored bands are placed diagonally to convey persons with disabilities “cutting across” societal barriers.
Image pulled from https://www.hrw.org/news/2022/07/22/observing-disability-pride-month-july 

Third Places and Disability

     What are third places? From Wikipedia “In sociology, the third place refers to the social surroundings that are separate from the two usual social environments of home (“first place”) and the workplace (“second place”). Examples of third places include churches, cafes, clubs, public libraries, gyms, bookstores, stoops, and parks. In his book The Great Good Place (1989), Ray Oldenburg argues that third places are important for civil society, democracy, civic engagement, and establishing feelings of a sense of place.“

     Third places are spaces separate from home and work where people find community. Sadly, real-world third places can be difficult to access. Where can kids go to just play, teens to hang out, and adults to relax with others? Where can we go that doesn’t cost money, allows us to be noisy or quiet, allows people from a variety of beliefs to be together, etc.? Online communities have become a third place that is important for many people but especially important for anyone with disabilities that may not be accommodated in real-world third places. Many third places are not physically accessible, not participating in public health safety measures such as masking, or don’t have programs/available spaces that are low to no cost. 

Check out this article by Imani Barbarin a Black disabled woman who is also a communications professional.
 

With Twitter Crumbling, It Feels Like The World Is Collapsing On Disabled People

by Imani
https://crutchesandspice.com/2022/11/16/with-twitter-crumbling-it-feels-like-the-world-is-collapsing-on-disabled-people/ 
 
November 16, 2022
 
     I don’t want to leave the platform and I feel like I am mourning it in real time.
They call us the “chronically online,” those who “need to touch grass,” the people who need to “log off,” but for disabled people, online spaces have been a lifeline in a world that seeks to erase and eradicate us. Even prior to the pandemic, platforms like Twitter helped us to feel less alone and gaslit by our experiences and allowed us to contextualize our experiences in a way that gave us peace.
     When I started CrutchesAndSpice.com, I was coming off another major depressive episode and was feeling hopeless about the future. It had taken a long time for me to find a job. My resume always “looked good” but I could see the enthusiasm drain from the interviewee’s faces when they clocked my crutches and, now that I had found a job, it was only part-time, and I was spending more on inaccessible transportation than I was making on my checks. Despite all the tv shows and films that I watched, none really showed what it was like trying to be an adult—or any person—with a disability. It was like we all hit adulthood and disappeared.
     I was raised to overcome my disability in quiet ways and always outperform people’s expectations, but that didn’t matter much once I was no longer cute and “inspirational.” And, because I was “normalized” in school from childhood, I didn’t have many disabled friends who could relate, and any time I spoke on these things, I was just told to work harder.
That is—until I got to use Twitter more often.
     I set up my Twitter profile in 2009 but didn’t spend too much on the platform until I started my first job outside of college in 2014. I had begun using my blog to write stories about being brought up as a Black, disabled child because that was something I never got to see growing up. I shared these stories on Facebook, but then branched out to Twitter and began engaging in conversations like #CripTheVote.
     Through those hashtags, I met other disabled people, particularly, Black disabled people who affirmed my experiences and were vulnerable enough to let into their worlds. I was finally seeing the representation I had always wanted and disabled people—Black disabled people were in the directors’ chairs creating our own narratives and forcing people to see us.
Moved by the community, I went to Graduate School for Global Communications with the express purpose of telling better disability stories and utilizing online spaces to create representation and community. Soon, I started creating my own hashtags and online movements like #AbledsAreWeird and #PatientsAreNotFaking.
     Through the disability community on Twitter, it is no exaggeration to say that the disability community saved my life, and it is through knowing them that I have found my purpose. I found answers to questions I didn’t even know to ask and support from people who only know me through their phones.
     Without their grace, kindness, and understanding, I can honestly say I don’t think I would be alive right now.
     The disability communities and discourse that was done prior to 2020 became critically important during the pandemic. We knew that the ways we discussed disability would mean life and death for thousands of disabled folks across the United States. Disabled folks, being criminally underrepresented, now more than ever were reliant upon nondisabled people’s view of the value of our lives as they debated whether it was prudent to participate in COVID-19 mitigation efforts or not.
     It was important that we shared information and resources and information with one another as the entire world had stopped more for us than any other group. While a lot of companies focused on the importance of disability in DEI work and how the pandemic proved accessibility and inclusion of us was always necessary, they fail to see the full picture. While the world finally came to the realization disabled people were right the entire time and that accommodations were for all, everything halted completely for disabled people.
We were left for dead.
     Hospitals quickly reached capacity and medical rationing guidelines meant that we were at the back of the line to get care. Society and the system saw no point in saving us. On top of that, we were cut off from our regular medical care, services, and education almost entirely. We had to sit and listen as people debated the merits of a disabled life and whether the economy should be punished for our existence.
     We were isolated completely, but we were able to connect and come together in our fear and anger over how our community was being pushed to the margins. We could make it to the timeline even if we couldn’t make it out of our homes and despite a world that had forgotten about us.
And now a billionaire has bought Twitter.
     It seems cartoonish that he would buy the platform that kept so many disabled people connected and therefore alive (for a greatly inflated price) and then seemingly scuttles it with bad decision after bad decision. For all the talk about how keeping disabled people alive throughout the pandemic was the greatest threat to the economy, it was he who cost corporations billions in mere hours.
     Thousands have lost their jobs or quit because of his “leadership” and the guardrails are off as content moderation disappears and accessibility no longer matters to the company.
Aside from the increased threat of harassment, the greatest threat to the disability community is all the advocacy, networks and supports we created on the platform could be wiped off of it.
I fear that if the platform disappears, the visibility that we’ve built—demanded—will be gone as well.
     All my sarcasm over the last few weeks has been out of fear of what seems to be this eventuality. I am looking for ways for us to continue to be connected, but I don’t think there’s any platform that can replicate the magic we created on Twitter.
I don’t want to leave the platform and I feel like I am mourning it in real time.
I don’t want to say goodbye.
     I have decided to stick it out as long as possible, but before it’s curtains, I just want to say to each of you: thank you.
     Thank you for saving my life and making it make sense. Thank you for the trust and privilege of getting to know you. Thank you for helping me understand my purpose. Thank you for helping me reach my dreams. Thank you for being unapologetically yourselves. Thank you for this community.
     I’ll see you on the next one—wherever we go.
Find more of her articles as well as social media profiles at https://crutchesandspice.com 

 

Chronicon 2023
     “On May 19th, 2023, a group of fabulous and caring people put their heart and souls into bringing the disabled and chronically ill from the Chronicon community, from all over the US and Canada, to meet each other face to face in many cases for the first time. They gathered to celebrate all that they are and all that they can and will become. It was truly the most amazingly iconic day…”
 
     “Chronically ill people are one of the largest marginalized groups in the US and we have a lot of work to do in having real equality in our everyday lives,” was our next topic of discussion led by the following panelists: Komal Minhas, Resilience Educator, Fortune Consultant, and Host, Julia Stephanides, Workers’ Rights Lawyer and Founder of Legally Holistic, Dr. Deepek Penesetti, Triple Board Certified Child, Adolescent, and Adult Psychiatrist, and Emily Ladau, Author, Advocate, and Speaker.
     Finding answers to our problems can be extremely difficult. That is why it is important for us to seek answers by finding our community. For instance, “Loneliness is also known as “Death by 1,000 Paper Cuts,” according to Dr. Deepek Pensetti. “When you have something that you do not share with others, that is loneliness.” “Loneliness is also known as “the silent struggle” and the best way to overcome it is with community,” according to Dr. Pensetti. He also added that “change happens when one person humbled by life helps another.” That is what Chronicon is all about.
Go to the website to read the full article about the event. https://mydiversability.com/blog/2023/6/28/summary-of-chronicon-2023-an-amazing-day-for-the-disabled-and-chronically-ill-community-to-come-together-to-celebrate-all-that-we-are 

Resources 

A collaborative effort shared on behalf of the JEDI team.

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Date:
July 26, 2023