Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities
Where They Are Now:
Loss, Grief, and Looking Forward
In February 2021, author Joan Christopher facilitated follow-up conversations with three people from the original interviews. These are edited transcripts from those conversations.
Recently, I went back to working three full days a week at a provider agency, where I answer phones and do other office work. It was good to get back to work because I have a house where I live alone, so I need money to pay the bills. But things aren’t back to normal yet at all. Through DC Project ACTION! I was given an iPad and I’m trying to learn how to use it to pay bills and do other things. But you know, I just want to go to the bank! So many things are done online now and I just miss doing things face to face.I’ve had a vaccine now and I’m hoping this helps us get back to normal, but this has been a bad year. When everyone first started wearing masks, as a Black man I felt as though people were crossing streets to get away from me because they thought I was probably a criminal. It was hard to see reports like that on the news, too. Now, we’re all used to the masks. And that’s why I’ll be so glad when this is over. I don’t want to get too used to this life. I don’t want to do everything online. I’m sorry if I keep repeating myself, but you’ve got to hear me. For some things, we’re just meant to be there in person.
It’s been a year of so many losses. My daughter Brandi, who was pregnant, died in July, and the baby died, too. We weren’t allowed to visit her in the hospital or even go to the morgue. We did have a beautiful memorial service, but it was over Zoom, with about 65 people attending. My daughter was deaf, and we had an organization perform a song through signing. It was an inclusive mix of hearing and non-hearing people, family, and disability community members. I lost a few friends to COVID-19 as well, and I’m scared of getting sick myself because I have physical disabilities and underlying conditions. I probably took more risks in the beginning of the pandemic than now and I’m more isolated today because of the sheer number of all the losses.And there have been other kinds of losses. A lot of direct support professionals aren’t able to work during the day because their kids are still out of school. I am only able to staff about half of the support hours for which I qualify. Many DSPs have left to do easier work for the same or more money, and there is a real shortage.Transportation was another huge setback during the pandemic. I was part of a group of disability advocates that did manage to get some taxi vouchers for DSPs, so they could get essential items for people with disabilities that they support. I also helped start an informal network of people with disabilities that meets every week to check on each other, socialize, and hear information about the virus. People talk about what it’s been like for them, and sometimes they cry. Sometimes they are angry. One time, two of our members delivered cupcakes to everyone’s home so we could have them “together” at the meeting. We’ve also distributed personal protective equipment.But people were barely getting by to begin with, and in this crisis, they’ve been stretched past the limit. This fall, I really struggled myself as all the losses piled up. I checked into a mental health facility for depression in September, but the room was inaccessible and I had a painful fall. I left against medical advice because I didn’t feel safe.Grieving my daughter and processing all these losses is going to take a while. There are so many regrets.
I had a support person for five years, and he died of COVID-19. He had taken off work for some surgery and he ended up getting the virus. He had been coming in five days a week. For a while, I didn’t have anyone coming in at all and I missed having somebody to talk to. Now I have people coming in once or twice a week. The hardest part now is getting used to being at home constantly with no one else here. I have three parakeets who are good company, but it’s not the same.Still, I’m glad I live alone because if I was in a group home or facility where I couldn’t come and go when I wanted, I wouldn’t like that at all. If I had to ask permission to leave, I would feel like I’m in jail.Trying to go to the doctor and stay healthy has also been hard because I have some health issues. At first the doctor wasn’t seeing any patients, but after a while, he saw me. Some of my doctors have taken early retirement because of the virus no now I have to find new ones.I serve on the board of DC Project ACTION!, an advocacy organization, and this work is a big part of my life. I’m on a lot of committees and have been involved in many city council meetings in Washington, D.C., where I live. Once I got an iPad, I was able to do my advocacy work and we’ve had a lot of meetings over Zoom. But I worry that in the future, we won’t have disability advocacy conventions in person anymore. When you go to live conventions, you meet new people and drop into conversations you never would have had if you hadn’t actually been there in person. We still can’t go to a lot of places because Dr. Fauci said that even with the vaccine we still need to be careful. So, we have to wait and see.The waiting is hard on people. At our advocacy meetings, we’ve had to put the topic of jobs last on the agenda because otherwise it would take over the whole meeting. People who are living with parents in private homes and people in group homes want to get out and make some money. It’s really on their minds. But people in the group homes are worried about the residents getting sick and in private homes, parents who are older are worried, too.We are going to have to find different ways to make a living that let people keep the independence we’ve fought for, or we’re going to go backwards.
None of Us Want to Stand Still | The video highlights the challenges that people with intellectual and developmental disabilities face in the health care system and presents solutions that have been implemented at Rush University Medical Center and Georgetown University Center for Excellence in Developmental Disabilities.