Page 25 - Tom Steyer Issue

constant education and giving out resources. “One of the biggest things that we have been really excited about was offering all the SMA families the opportunity of receiving a COVID-19 support package,” McCarthy O’Toole states. The organization sends out surprise boxes with hand sanitizer, wipes, gels, tissues, and items to keep adults and kids occupied. To date, they have delivered more than 1000 of these packages.
Jaclyn Greenwood
have been criticized for putting people with disabilities at a disadvantage if they got infected with COVID-19. Fortunately, so far, McCarthy O’Toole hasn’t heard of any such cases related to SMA. “The protocols have since then been updated,” McCarthy O’Toole clarified.
Jaclyn Greenwood, a 31-year-old genetic counselor from Southern California, received one of these boxes from Cure SMA. The young woman lives with SMA type 2, which causes muscle weakness all over her body. She uses a power wheelchair for mobility. “I also need support with daily activities of living, such as transferring, bathing, or dressing,” Greenwood says. Because of SMA, she has a compromised respiratory system and is more susceptible to respiratory diseases. Therefore, Greenwood needs to follow strict isolation protocols to protect herself from getting infected.
Every person with a disability has to adapt to surround- ings, limitations, and access barriers. They are used to finding innovative solutions for their problems, and they are resilient. Because they always had to be. These char- acteristics certainly helped all the workers and members of these organizations to cope with the uncertainties of COVID-19.
So far, she has only left her house once to go to a doc- tor’s appointment for an essential treatment she couldn’t postpone. The support from Cure SMA, where she is currently on the board of directors, has helped her to cope with all the worries. “I have been very proud of Cure SMA and how they adapted. I got my COVID-19 care package on Wednesday, and it was so nice to open it and get surprised. Additionally, they have also provid- ed gift cards where you can choose from Amazon, Grubhub, and more,” Greenwood said.
Many are the frontline workers who are unified in their dedication to their communities. “That’s a choice that I made. I am committed. I am committed to the field and to the people I support. So, this is a risk I am willing to take.” Antoinette Powell, YAI’s senior supervisor.
Nevertheless, the situation is still unnerving for people living with SMA. “It is a little scary to think that you might not qualify for treatments that you need. My life is worth living. And I want to be given every chance to fight this if I get sick with COVID-19, just like anyone else,” Greenwood stated.
When asked what she wished non-disabled people would understand about this situation, Greenwood sum- marizes it quite well: “We are all in the same storm, but we are in different boats. I am really thankful for any- one in this world that has sacrificed so much to protect those of us who are high-risk. It’s really incredible to see how we all came together.”
“It’s hard to cope with. It always feels like there is a dark cloud hanging over you. You honestly just try to control what you can control. Focusing on your daily life, keeping a routine, staying busy, finding a distrac- tion,” Greenwood explains. “We are in a marathon right now, and we aren’t even half-way through this. I think it is the uncertainty about what this is going to become and how long it is going to last that’s so challenging,” she added.
During a health crisis that has particularly affected peo- ple with disabilities negatively, the work of organiza- tions supporting more vulnerable populations is critical. YAI, NEXT for AUTISM, and Cure SMA managed to face the pandemic head-on and adapted their services to protect, educate, and support people with a variety of disabilities.
YAI, NEXT for AUTISM, and Cure SMA continue to do their best to protect the people they serve and help their members to get through this together with compas- sion, resilience, and adaption - all skills many people with disabilities had to master while living in a society not equipped to provide inclusion for everyone.
An area Cure SMA monitored closely was the recently implemented triage protocols in particular states that
by Karina Ulrike Sturm
nextforautism.org curesma.org yai.org
ABILITY 25