N-ABLE Guide Jenn Wolff is a renowned advocate for the disability community and contributes to several leading organizations who are coordinating care response measures for wheelchair users in the wake of COVID-19. Below, Jenn shares the hope and faith that has sparked in uniting for our common good, through the disability effort that is emerging in the face of this healthcare storm. Please enjoy as we have a little fun with our favorite Star Wars-themed day of the year, while we welcome you to a new world of fun and support here at NATURALLY ABLE.
May the Fourth Guide You, dear friends who are just now discovering N-ABLE!
We’re in a different world at the moment, I agree, but many of you already have mastered so many Jedi knight skills related to coping and adjusting. The rest of the world could use those, too.
We have always known that the Force is strong with individuals in our community.
Presently, many organizations, healthcare providers, industry advocates and non-profit groups are collaborating in ways that will strengthen “The Disability Resistance” long after this current environment ends. The great news is that, because of these collaborative efforts,our continued fight for access and equal opportunities will be even better supported on the other side of this new normal.
ORGANIZATIONS UNITE TO PRIORITIZE HEALTHCARE RESOURCES FOR PWD
As medical rationing became a real threat during the coronavirus pandemic – from Washington state to Alabama – over 400 disability related national and state organizations sent a letter urging the Department of Health and Human Services (HHS) to issue further guidance addressing the application of federal non-discrimination laws to plans to ration scarce health care resources during the COVID-19 pandemic.
The April 17, 2020 letter noted that too many state and hospital care plans discriminate against people with disabilities and older adults. If implemented, these plans would deny or give lower-priority to life-saving treatment to people based on disabilities or age that have nothing to do with their ability to survive COVID-19.
Forbes Magazine also wrote a good overview of the issues at hand – view it here. Like the Resistance having many allies in every corner of the galaxy, organic grassroots efforts are popping up all over social media to advocate for disability justice issues. (NATURALLY ABLE is proud to be one of those advocates too, by the way.)
The Awareness Power of Hashtags
As more news on this topic spreads on social media, a new generation of hashtags have emerged to assist with the awareness effort.
#NobodyIsDisposable is related to states that are rationing healthcare resources, with the goal of bringing visibility to those local issues: “Disabled people, fat people, elders, and people with AIDS or other illnesses are being specifically targeted for denial of life-saving care during care rationing. These triage policies disproportionately target people of color, poor folks, immigrants, queer and trans folks, incarcerated and homeless folks, and others already considered disposable by capitalist, white supremacist society.”
#WeAreEssential was developed from an amazing collective effort who have been working on the inclusion of disability-focused policies in COVID-19 response legislation. Part of the goal of the #WeAreEssential movement is dependent on YOUR own effort on social media too.
Viewers with disabilities are being encouraged to participate in the effort by telling our stories through video, pictures or writing on social media using the hashtags above to make sure Congress hears our stories.
NASCIC Serves as a Spinal Cord Injury Collective Thought Camp
A lesser known friend of the Disability Resistance is the North American Spinal Cord Injury Consortium (NASCIC). NASCIC has been uniting SCI/D organizations in the US and Canada under the umbrella of research, with inclusion of the community from project planning to dissemination of information.
In light of the pandemic, NASCIC has switched gears to react to COVID-19 and will start a 10-session webinar series called “SCI: Moving Forward in Response to COVID-19” on May 12th. Topics will cover attendant care, respiratory issues, mental health, emergency/disaster planning and resilience.
Learn more about the webinars and become a NASCIC member! A new hope on the horizon for disability care is a project being developed by three disabled occupational therapists, in collaboration with disability organizations (TAP Partners) and national therapy professional associations, to help meet the needs of individuals with disabilities and seniors/older adults in our communities during disasters and beyond.
Called TAP, short for “Therapist Action Plan,” it also provides a unique opportunity for therapy professionals and students to experience self-directed services and to learn the lived experiences of people with disabilities while becoming a partner for thriving and surviving.
HOPE IS ON THE HORIZON
If you (or someone you know)are struggling to find a personal care assistant or direct support professional, please call the Partnership for Inclusive Disaster Strategies Hotline at (800) 626-4959 to get connected to TAP. If you are involved in a larger organization, consider joining the TAP Partners group on Facebook to be part of the network.
I view this is an opportunity for the disability community to teach therapists about independent living and for them to share their knowledge to meet your goals.
Someday, sooner rather than later, COVID-19 will be under control. The current challenges are like the Dark Side of the Force (can’t you hear Darth Vader breathing?). They seem ominous and hard to overcome. Like the Jedis, the force is strong within our various communities who are connecting in spite of COVID-19. If we continue on this path to building bridges, it will not only be a win for each other right now but also for a better future for all. I’m in favor of that kind of future, for all of us who have a disability, especially if it has light sabers too!