Grab a cuppa and a comfy seat, and let’s chat a while. It’s time for Coffee and Conversation.
When I was six, my family was driving on a highway late at night. Streaks of headlights and taillights painted the dark. For the first time, I realized that each car held people living lives as important to them as mine was to me.
I wanted to know what those lives were, and to share my own..
Have you experienced discrimination because of disabilities? Discrimination comes in many forms, from refusal to employ or accommodate a person with a disability to treating that person with disrespect because of it.
Before I was married my husband, I was engaged to a man named Tim, who died of cystic fibrosis in 1995, at age 32. Too often, I watched others treat him differently, because of his disability. Discrimination isn’t always outright and a clear violation of someone’s rights. It can be subtle, a matter of attitude and treatment in smaller, less obvious ways.
I myself was guilty. Our first date was a year before our second. Although I liked Tim, I chose not to continue seeing him, because he was sick – seriously sick, in a way that would lead to death. I was afraid of that, and so I hid from any relationship we might have had. We only had a second date because I happened to run into the mutual friend who had introduced us, and she mentioned having seen me. Tim called me the next week, and, while he was talking about his involvement with a support group for adults with cystic fibrosis (no so long ago, people with CF always died in childhood), something clicked inside of me, and I told him, “I’d go with you, if you wanted.”
During our time together, I observed assorted forms of mild discrimination against Tim, such as:
- Treating him as though he were contagious or untouchable.
These might seem insignificant, but they bothered him enough that he became something of a hermit for the first year or two after his diagnosis, seldom leaving his apartment.
Sadly, the ways in which my own family discriminated against Tim were more serious, because they affected our relationship directly.
- My mother never made a secret about wanting grandchildren. Most men with CF are rendered sterile by the rigors of the condition. There were measures that could be taken, but no guarantee they would work, and so, in accepting Tim’s proposal, I accepted the distinct possibility of a childless life – and my mother resented that openly.
- I asked my sister to be in our wedding party, and she refused, because she didn’t think my marrying Tim was ‘a good idea’, because he had a life-threatening condition.
- It wasn’t easy for Tim to get up, once he was sitting. I was happy to bring things to him, but, if I was at any distance, his weakening voice didn’t carry well, and raising it made him breathless. At some point, we realized that whistling was easier for him, and an effective way to cut through the normal sounds of conversation. I could hear it even at a distance. Again, though, my family objected to this adaptive measure, characterizing it as ‘whistling for you like you’re a dog’, and resented my going to him when he did. The things she said about it made it seem ugly, when it was truly an elegant solution we had both agreed upon.
There was even a case of discrimination by Tim’s own mother, who, after his death, left me a card with a message that said that Tim had needed ‘someone to look after him’, and she was glad that I was ‘willing’.
But it wasn’t like that. I wasn’t just ‘looking after’ Tim, and I wasn’t just ‘someone.’
I loved him. Fiercely, and without reservation. I all but lived with him in the hospital. Our relationship was rich, passionate (we had ways of adapting there, too!), deeply layered and textured. He wanted to be my husband, and I his wife, and, although we didn’t make it to that point, we lived, for those months, as though it was true in fact as well as in our souls. I wasn’t ‘someone’ – I was his lifepartner. I was the one who held him as he died. I was the one who lived with him, and loved him.
Tim’s disabilities were a part of every breath he took, every minute we spent together. But they weren’t him. He was a person. A man. The man I loved.
It will be twenty years next April since Tim died- and yet, he’s still a part of me, still with me in ways too deep to analyze. But the most important thing I gained from loving him was the certainty that every person with a disability is wholly a person – with the same needs, hopes, and dreams for personal connection, for being seen and valued as they are, as ALL of who they are, as any of us. That’s something of great value to me, and something I hope I have been able to instill in my own children.
People are people. No one IS their disability. It may affect them in every area of their lives – but it makes them no less human. To imply that it does, to act as though it does, is to cheat everyone – the person already contending with the obstacles of the disability, and the person who won’t ever get to truly know that person, because the label and the condition are all they can see.