Positive Approaches Journal, Volume 10, Issue 2
Self-advocates United as 1 | 37-42
Volume 10 ► Issue 2 ► August 2021
My Life, My Way:
After the Pandemic: Let’s Talk
with Self-advocate
Self-advocates United as 1 Members and
Facilitators
Self-advocates United as 1, Inc. (SAU1) is a statewide Pennsylvania non-profit, led by a volunteer board of directors who are all people with developmental disabilities. SAU1 was founded in 2007 and gained its independence in 2015. SAU1 Power Staff are mostly professional self-advocates with support from experienced facilitators from all over the state. SAU1 volunteers and staff are passionate about SAU1’s mission: To support the self-advocacy of people with disabilities for positive impact in our communities and in people’s lives.
SAU1 manages the Self Advocacy Power Network for All (SAPNA), a project of the Pennsylvania Office of Developmental Programs (ODP) since 2016. SAPNA provides interactive events for self-advocates written and led by professional self-advocates. SAPNA also supports leadership development including empowering self-advocates to use their voices in meetings and events that affect their lives, to put into action our belief that there should be Nothing About Me, Without Me!
SAU1 staff and volunteer leaders met virtually to talk about “My Life, My Way – After the Pandemic,” following a request from ODP to offer personal experiences and thoughts. The people involved included 11 self-advocates and 4 facilitators who are also family members. Everyone shared their own personal views, not the views of the organization. People could give multiple answers to each question and are included in the narrative and captured in the charts when more than one person gave the same answer. Our goal and hope is for people to learn from their answers.
“If you are vaccinated, why did you decide to do it?”
Everyone
shared that they wanted to stay healthy, and to help keep others safe and
healthy. Many shared thoughts of people
important to them – a Grammy, a mother with cancer, a 91-year-old father, and
grandchildren and others who could not be vaccinated. One person said, “It is better to be safe
than sorry, and I’m proud that I don’t want to get anyone else sick.” Many
shared that they have other health issues or conditions and worry that they
might not survive COVID. One took the advice of his doctor who said it was the
best thing to do because of their health and disability. One went through three
personal COVID scares and doesn’t want any more. Another shared that people get
really sick from COVID, and vaccines keep him safe. One lived through a mild
case of COVID and decided that if that was what a mild case was like, she did
not want to risk getting a more serious case. Another doesn’t want to lose any
more friends to COVID. One person wants to protect himself from people who
don’t take COVID seriously. He feels getting vaccinated is his responsibility
both as a human being and a citizen. (See Figure 1.)
Figure 1.
“What is something you are really looking forward to doing?”
People
were very excited to talk about things for which they have been hoping and
waiting. Several shared that they can’t wait to travel, out of town, overnight.
Dreams of going to the movies, to concerts, to amusement parks, to family
reunions, on a cruise, shopping in a store instead of online, and meeting
friends for drinks were all talked about. Being able to see people in person,
including family members and friends, and hugging them were also important.
Everything they liked to do before the pandemic is important to them all. (See
Figure 2.)
Figure 2
“How are folks feeling about returning to things in the community?’
Most
are anxious, unsure, and nervous. Some are ready to go slowly and put
themselves out there. For those in areas where masks are no longer mandated for
vaccinated people, some feel anxious when they go out without a mask since they
are so used to it. One person shared that he had been to a couple of festivals,
and it felt weird because he didn’t recognize friends since it had been two
years since he’d seen them. Others are looking forward to returning to some
sense of normalcy, but their families are concerned that something else –
especially another pandemic – may come, so are being very cautious. Some are
worried because they don’t know if others are vaccinated, and some because
people invade their sense of “space” when in public. Some are comfortable continuing
to do things remotely, like using delivery for groceries and meetings online. A
couple of people feel great and are excited, one can’t wait to go out and
“spend the big bucks,” and another shared relief that it isn’t such a crisis
anymore. One person felt the world had turned upside down, that the first are
last and the last are first. He worries we will go back as a society to where
we were before COVID, but hopes we continue to develop. (See Figure 3.)
Figure 3.
Do you feel people understand your concerns?”
We
at SAU1 feel this is the most important question, because speaking up works
only when people are listened to and heard.
Not surprisingly, the answers show that this is cause for great anxiety
and worry. Many shared that others may not believe those who are worried or
anxious, or may be surprised by our concerns, or just won’t want to hear about
it. For those in rural areas, there are many people who have never been
concerned or followed guidelines which shows that they will not listen to or
understand others’ concerns. There are still people who think COVID was just a
hoax and refuse to listen to science. Some don’t like that family, friends,
staff, and others refuse to share whether they have been vaccinated. Some are
scared about people who did not get the vaccine. One-person shared concern and
bewilderment that some health care workers are choosing not to be vaccinated.
Others are staying home or away from other people when they know their concerns
will not be considered. (See Figure 4.)
Figure 4.
People
with disabilities have many of the same dreams and hopes as most other people,
even as a pandemic starts to wind down. They may be experiencing more worry and
anxiety because of increased vulnerability due to existing health
concerns. In this, as in all aspects of life, each person with disabilities
must be encouraged to speak up, and others must truly listen and give them the
same respect other people have to My Life, My Way.
Contact information
Go to www.sau1.org or email us at info@sau1.org to learn more about us and our work.