During COVID-19, ALL of us have experienced the effects of quarantine on some level. For some of us, we are experiencing a life of isolation, loss of freedom, anxiety, fear, sadness, loneliness, etc all at the same time. While many people are going through this for the first time, members of the special needs community have been experiencing this life much, much longer. They are living in this state of confinement all the time.
So what are we learning from this experience? Is it possible that we have a great deal to learn from the special needs community while we navigate our new normal? They already know what this is like.
Cheryl suggests that we could accomplish far more by humbling ourselves and taking the experiences we are having and applying them to how we are advocating for the lives of people with disabilities.
Many parents and caretakers are saying that they have actually seen improvements being made in the lives of their loved ones with disabilities. There are reports and anecdotes that these citizens are suddenly learning new skills, living with less anxiety, processing and using new language, and more. While this definitely isn’t the case for everyone, it is happening enough to create conversations.
Why is this happening?
Cheryl suggests that these individuals aren’t just suddenly blossoming with new skills and abilities — they have been there all along. What IS changing are the situations and barriers to being person-centered that have existed systemically that have stopped these skills from being shown, and that have stopped us from recognizing them. In short, the environment has not been conducive up to this point.
Whether they were in day programs, group homes, supported employment, etc, disabled individuals have been controlled, managed, moved around, and dictated without being given enough freedom to say “I don’t want to do that,” “I’m feeling tired,” “I’d like to read myself instead of being read to,” “I don’t like this person,” “I’d like to say something but everyone else is talking for me…”
Even when others are around them, members of this community have been living in isolation, blockaded from freedom, and filled with anxiety from knowing what they need without being given the opportunity to communicate it.
Of course there are places and people who do offer and have offered these opportunities, but it is not the norm. Instead, the service models are dictating extremely controlled environments.
Essentially, the message has been “We’re going to make sure you like one of these 5 things that we offer within our service model. If you don’t like any of them, we’ll write a behavior plan until you do.” Nothing about this system has provided the means to stop, listen, and rethink.
There are a lot of initiatives going on right now surrounding the changes COVID-19 has brought on. To learn more, listen to Cheryl’s guest appearance in our Circle of Care Facebook group here.