All of my career as a disability advocate, I have provided direct care supports for people with disabilities. In the early years this support was merely getting people into the community. In this pre-ADA environment, and especially in a city as hilly and inaccessible as Pittsburgh, we had to lug, lift, and carry folks into settings where engagement could occur.
As accessibility improved, it was easier to get people into the community, but caregiver supports were (and are) still necessary. Making sure folks could fully participate included helping with meals, eating, and getting bathroom supports. I remember flying to an out of town conference with a friend with cerebral palsy and midway to our destination he needed to use the bathroom. Imagine seeing 2 grown men shuffle into the airplane bathroom that can hardly fit one person!
Daily hundreds of thousands of people, some paid direct support professionals, other family or friend caregivers provide vital services so that folks with disabilities can fully participate and engage in the community. In fact, without caregiver support, we would not have community inclusion. In essence they are symbiotic.
My sensitivity to caregiving was recently heighten to me as I had a total hip replacement surgery. When I came out of the procedure, I was fully dependent upon caregivers. I was not allowed to make a move without a caregiver to support or monitor me. This need for total support was a wake up call to me regarding caregiving. Up to this point I was always placed in the caregiver role; now, in this dependent state, I was the care receiver. I had to wait, rely on, and in many ways, fully yield to the caregiver.
I know that I will continue to recover from my hip situation, and that my dependency will be temporary, but the experience of being in need, has opened my eyes to the importance of caregiver, care receiver balance. It is clear that for full inclusion to happen, caregivers and care receivers must work together to assure that all aspects of engagement unfold.
So if you are a caregiver, either direct support professional, or family caregiver, keep sensitive to the realities of the care receiver. In my dependent state, I always found it empowering when the caregiver asked me, or incorporated me in the care process. As caregivers, if we just image how we would feel, or how we would want something done, we can never go wrong.