My husband was recounting a story to me about a friend who has a child with a disability. Something bad happened to the child at school. Naturally, the parents wanted changes made to ensure that their child was safe. The school did not provide what was needed. The family moved on to legal action but, still never received adequate assurances that the child would be protected; therefore, the child never returned to school.
The friend’s statement was the school system “knew they could just wait us out. They knew that, regardless of our ideology, we would ultimately do anything to keep our child safe, even if that meant giving up.”
Having resorted to legal action for issues regarding our own child in the past, I understood completely. Regardless the weight of the injustice of the situation, accepting our “favorable” resolution was the only option, because continuing to fight meant that, ultimately, my child would be the one to risk the battle scars.
Many families like mine, where someone has a significant disability, often find ourselves in need. We are in need of medical treatment, equipment, supplies and health workers, personal care aides, and, where I live, out-of-state transportation to medical specialists. We need person centered supports, therapies and respite providers. We need special education services, many times at schools that are not close to home. We need; therefore, we act.
We fill out the forms. We go to meetings. We try to keep up with the ever-changing morass of rules and regulations that surround the “services” that are supposed to “support” us. We sit in rooms with people who hold the power and privilege to grant or deny these needs. Sometimes we are disrespected and disregarded. Even then, we do what is needed for the well-being of our children.
Although most people go into education and human services with good intentions, these positions are, often, not well paid and turnover is high. So when the occasional “bad apple” comes through, our families are vulnerable. Even when we have “good” service providers, we carry the weight of knowing we can lose them at any moment, and have to start over. The weariness of reciting your child’s entire life and medical history to yet another stranger. Yes, he was a preemie. Sorry, I don’t remember his Apgar score; he’s 17. Ok sure, let me go look that up for you. I thought I’d hacked the system by keeping pre-made copies handy, until they started insisting, “I’m sorry, ma’am. We still need OUR forms filled out.“
Cuts to programs that serve people with disabilities will only serve to shift more weight onto families. Like our friend, most will do “anything” to keep our children safe, but if the only safety net we have is pulled from beneath us, that weight could become crushing.
We need to work together so that our vulnerable families are able to survive. I believe the answer lies in the capacity of each other, the greater community, both to come together to fight for service systems that actually serve, and to form relationships that lift us up when our burden becomes too heavy.