“No man is an island unto themselves entire of itself; every man is a piece of the continent, a part of the main” -John Donne
Never was the above statement truer than when it is applied to a family with disabilities. I am a disabled parent with a genetic condition which has also been passed down to my children. Thus, our family is a web. There are no one person’s issues. While one person may be having more symptoms at the moment, those issues invariably will reverberate throughout the web. Whether it’s a need for transportation because I can’t drive, rescheduling my appointment because someone’s needs are more pressing or someone having to pick up a prescription on their way to work, our genes have inevitably tied us together. On this boat, we all float through life together with disability encompassing and weaving its way through every family members’ life making our bond tighter and more stressful all at varying times.
Yet, the American with Disabilities Act and many of our current laws have yet to reflect and support the web we have created which allow each of us to live our separate lives collectively together. The ADA guaranteeing rights to those with disabilities was indeed a wonderful first step 26 years ago. The legislation was much needed and groundbreaking.
However, we now need to ensure that this instrument of disability rights does not rest on its credentials. We need to make certain that instead the ADA becomes ever evolving, that it continues to grow and change as the disability movement around it changes. It now needs to expand to protect not only the disabled but the web of support which allows each of the disabled to remain independent. The ADA needs to reflect who we want to become and also who we are at the present moment.
I for one know that who I am and the independence I cherish so dearly, was not created by living on an island. It was created and is assisted every day by those I love. By those who believe like I, that an independent life, no matter who you are, is everything. It is a right and a purpose for moving forward. It is time that those who willingly and lovingly tangle themselves in the web of disability family care are given the same protections that the ADA has given to me.