All of my career I have provided direct caregiving to folks with disabilities. In the early years (1972) we worked hard to get folks with significant disabilities out into the community. In these pre-ADA days, and especially in an inaccessible and hilly city such as Pittsburgh, a lot of this care giving support was lifting, carrying, and transferring folks into inaccessible places just to be a part of the mix.
As accessibility improved with more ramps, lifts, and accomodation, caregiving supports shifted to the attendant supports of helping people in bathrooms, being able to eat, and other personal care. I remember travelling by air with a friend who had cerebral palsy to a conference. The flight was delayed so they offered us free drinks, and before you knew it, the 2 of us waltzed up to the bathroom for the inevitable. Imagine doing personal care in an airplane bathroom that hardly holds one person!
Later, when my dad began to struggle with Parkinson's disease, our family worked hard to keep him engaged and active in the community. Taking care of dad so he could be an active part of our community became a key part to his dignity. There is no question that caregiving, both physical and personal is a key ingredient to inclusion. For some people, the only way they can engage in the community is through caregivers. Indeed, an entire category of direct support professionals along with countless family caregivers play an essential role in the inclusion process.
I have always been aware of this, but recently my sensitivity to the caregiver, care receiver relationship has been seriously heightened. Just a couple days ago I underwent a total hip-joint replacement and as I write this blog, I am fully dependent on caregivers. I needed assistance for the most basic needs, and although I am on the mend, and will hopefully regain strength, dexterity and ability, this experience has been incredibly humbling. It has given me a new appreciation for what it feels like on the other side.
I know from experience that providing care can be exhausting. I have lived it for the past 45 years of my career and life. Now, however, I know how exhausting, frustrating, and unpredictable being the recipient of care can be. It is a good and important sensitivity. In a way, a silver lining to the struggle and pain this experience has brought to me.
So, if you are a direct support professional, or friend/family caregiver, or, if you are a person who relies on caregiving to engage with your community, try to remain sensitive to this critical symbiosis. Community inclusion does not happen without caregivers, and community doesn't really benefit until all people are present to engage.