This past January, my family and I gathered in a tiny hospital room to say goodbye to my uncle Rolf. He had Down syndrome, and we didn’t know until toward the end of his life that people with Down always get dementia. It took away his balance, his words and his memories, but he was happy up to the very end. Honestly, he was the happiest person I’ve ever been lucky enough to have known. He loved everyone, and he greeted even people he didn’t know with a smile and a hug. He had a job, he had hobbies and he had friends. He was a full person just like anyone. He loved life and he didn’t deserve to go the way he did.
I didn’t spend enough time with my uncle, and that’s my regret to carry. It’s easy to forget people with disabilities and to dismiss them and the people who care for them. I missed out on too much of his life. But when I walked into his hospital room, when he was comatose, I saw something truly moving. He was surrounded by people whom I didn’t know, holding his hand and talking about his life. They smiled and cried as they talked about taking him to church or helping him get to work or just spending time with him. They were his real family, not us, the people who had his blood but knew so little of him. They were the people at his group home, and they had chosen to take time out of their day, unpaid, to sit by his side.
I cannot imagine what it takes to work with developmentally disabled people. I know how difficult it was to deal with Rolfie when I did spend time with him. He was loud. He could be violent. He was emotional. The people in the REM homes, and all facilities like theirs, chose that difficult job of working with him.
They certainly don’t stick with it for the money; their salary is abysmally low and funding is very tight. There aren’t a lot of benefits to doing their job; it’s hard and thankless and complicated. They do it because it’s right and it’s kind. They take the abuse and the difficult decisions and all of the care it takes to keep an entire house full of developmentally disabled people running, while walking an extremely fine regulatory line, because they choose to. Their clients become their families, and they love them and take care of them when no one else — not even their birth families — can or will. They do it knowing that, eventually, they’ll have to go to countless tiny hospital rooms all over the world and watch their family members die, just like Rolfie. It’s a heartbreak that they endure over and over, and they still choose to come back to that job and love those people.
I know that a sensational, villainous story about repression and rule-breaking is more interesting than a story like Rolf’s (“Alone and at risk,” Part 2 of the five-part “A Matter of Dignity” series, Nov. 9). But the truth is that these homes are staffed by wonderful people who give so much of themselves and expect very little in return. They have to play parent and sibling and disciplinarian and friend to all of these people, and all they want is happiness and safety for them. They’re not unfeeling government employees who are holding their clients back from having a life. They’re dealing with applying state guidelines with harsh penalties to real, living people, and that is a grueling job that I would not want to have. Painting them in such a one-dimensional light is unfair at best, and willfully ignorant at worst.
This article isn’t for me. I failed Rolfie, but the people who loved him didn’t, and they haven’t failed anyone. They need to be recognized for the unbelievably hard job they do; their side of this story needs to be told. Still don’t believe me? Volunteer. Go to those homes. Talk to those people; give them a chance. Decide for yourself. But don’t condemn them for doing their job. We owe them that much.
Jessica Axelson lives in Pine Island, Minn.