“What the president should do before he says something is to sit down and become better acquainted – have a personal connection to the painful history of racism and bigotry of this country.

“It would be fantastic if he sat down with a group of folks who have endured the pain of the ’60s … the humiliation of the ’50s and the ’60s. This would be an opportunity for him to become better educated and acquainted with the living history of so many folks, from John Lewis to my mother and so many others who have gone through a very painful part of the history of this country, so that when he acts … he’s breathing the very air that brings him to a different conclusion, a conclusion that comes from the wells of his heart.”

– Sen. Tim Scott, CBS’ “Face the Nation,” Aug. 20

After reading the recent front-page stories in the Maine Sunday Telegram about the experiences of Ethan Poulin, Brittney Ireland and Bradley LaPointe in our state’s flawed system of care for adults with developmental disabilities, I took a break to watch the Sunday morning news programs. As I sat down with my cup of coffee, the first thing I saw was John Dickerson’s interview with Tim Scott. The subject was the tragedy in Charlottesville — “tragedies” would be more accurate — and the South Carolina senator’s reaction as a Republican politician, both to the event itself and to how President Trump handled his comments on what occurred.

What caught my attention most was Scott’s perspective on Charlottesville as an African American, with a family history that includes poverty, discrimination and probably slavery. These experiences aren’t just one aspect of lives lived as Americans. They are a defining element of these lives, part of the permanent fabric of an individual’s and family’s experience that can’t be separated from other aspects of regional or family culture, or understood as merely a single isolated element in an individual’s or family’s history.

Lived experience

After reading about the lives highlighted by the Telegram stories, the connection I made as I listened to Scott was this: Communicating such a fundamental and powerful element of another person’s experience is enormously challenging to someone living outside that experience.

How can a white person come to deeply understand the experience of living as an African American? How is someone born into wealth and who has lived an entire life of privilege able to truly understand on a personal level how corrosive the influences of class and poverty can be? Or how can someone who has always lived outside the experience of serious disability truly understand what it means to be disabled, or what it is like to live in a family affected by, for example, intellectual disabilities or autism?

As the parent of an adult son with intellectual and other disabilities, I have learned over the years that it is hard for other people to grasp what that experience is like. I’ve spent my life as a parent over the course of decades trying to maintain the health and quality of life for my son, who is highly dependent on support from others for basic needs.

It is always challenging and often exhausting work. It takes a leap of trust to allow others to provide that support when the time comes. And there is always the lingering guilt that somehow, as a family, we should still be providing that support. (Anyone who has faced the need to arrange increasing amounts of support for an aging and failing parent might begin to appreciate such feelings.)

A stay-awake worry

In the not-too-distant past here in Maine, my son might have been placed at Pineland at an early age. In fact, this was recommended by a perhaps well-meaning, if poorly informed, physician when he was a toddler. Fortunately, special education law and the trend toward deinstitutionalization that resulted in the closure of Pineland years ago allowed him to attend public schools, and he now lives in a supported residence in his home community.

He is one of the lucky ones. He benefited from strong parental advocacy, good schools with dedicated and skilled teachers and therapists and a supportive community. The governor and Legislature during the time he became an adult were committed to eliminating waiting lists for services.

Today, the agency that runs the group home where he lives provides him with necessary supports and quality services (though these services and supports are at risk because of the low pay of the staff and the financial losses faced by the agency).

Having networked with other parents and families dealing with disability over the course of many years, I have come to recognize a couple of common concerns that always come up in conversations: Who can provide the kind of care and support to our son or daughter that we as parents have always provided? And what will happen when we die? Who will ensure that our son or daughter won’t be neglected, abused or otherwise victimized?

It is the wide-awake at 2 a.m. staring into the darkness worry. Though it can come to us at day’s end as we try to sleep, it is never very far from a parent’s mind — day or night.

A broad commitment

Just as we have decided that elderly Mainers have the right to needed supports and assistance when they can no longer care for themselves, and we say that military veterans, having acquired disabilities as the result of their service, should expect our support, so, I believe, do my son and others who have intellectual disabilities, autism or other developmental disabilities deserve the resources necessary to safely live in their home communities with the supports they require.

It is my hope that the stories in the Telegram – of the alleged neglect of Ethan Poulin, the roadblocks to services for Brittney Ireland and the death of group home resident Bradley LaPointe – will help to inform the public of the importance of maintaining a strong system that provides them and my son with the supports they need. It points to how the system needs to be improved, and some of the areas in which it is, sadly, at present failing.

Mainers should never again have to hear a story like Bradley’s, which culminated in circumstances that left a family behind with few answers and a lingering sense that his life did not have to end as it did. And there remain many hundreds of Ethans and Brittneys and Bradleys who, along with their families, are waiting for needed services.

Agencies face financial peril and critical staff shortages while trying to provide adequate services because state reimbursements do not cover the costs of providing these services. Dedicated people working for the state and local agencies are trying their best to do good work. But until we have committed leadership gathering all stakeholders together with a focus on addressing the serious challenges the system faces, too many Maine citizens dealing every day with disabilities will remain at risk.

David Cowing is a resident of Woolwich.