It’s one of the hardest lessons I’ve had to swallow. That there is a difference between reality and how things should be.
It makes sense in my head that if I treat my caregivers well and accommodate them to the best of my ability, then nobody will quit without notice, right? Not reality. It makes sense that since I was born with spastic cerebral palsy, that nobody else in my family would struggle with balance and walking well. Not true. And you would think that in 2019, nearly 29 years after the Americans with Disabilities Act became federal law, I wouldn’t have to fight for accessibility.
The last issue started about six weeks ago. Two men who I greatly admire who know a whole lot about marketing books teamed up. They were sponsoring a writer’s conference, to be held at one of their homes. Anyone with a book or a book idea could go and come away with a step by step game plan about what to do next, including how to sell a whole lot more copies of the book. The two-day conference on the west coast this summer was expensive, to say the least. But the more I thought about it, the whole thing seemed like a good investment. Everything that I would learn could not only apply to the book I just wrote, but also to any book that I write in the future. I still had a few questions about the whole thing, but I decided to pay the $50 application fee and see what happened.
Once I did so I was emailed a form to fill out. I filled in all the blanks concerning what my book was about and what I wanted to see happen with it. The last question on the form was “Is there anything else you want us to know?’ It was at that point that I mentioned that I was a wheelchair user and had a need for physical accessibility. Mentioning that is almost an afterthought to me these days. In this world of diversity and inclusion, it doesn’t seem like it should be a big deal. A few days later I got the first email. They were not sure the home where the conference was set to be held was accessible. Someone was going to check. Could I give them a few days to get back to me?
About two weeks passed before the phone call came. “The first guy’s house is not accessible, Lorraine. But we can send you to one day of another conference on the east coast in November for free.” I thanked them for the effort, then I told them that doing so would not give me the same outcomes that I was hoping to get from the first conference. I had wanted to go to the original one because it was there that I would get feedback on how to best market my book. The video advertising the original conference boasted of four people being there with collectively 100 years of book marketing experience. I was also looking forward to networking with the other participants. They then offered to have me meet with one of the guys for less than half an hour after the day of the conference. The thing was if I did that, the cost was not free anymore, but thousands of dollars for a half hour of his time and a short video he was willing to make talking about my book. I considered the option. But I knew that in terms of my ability to find a caregiver to accompany me, going to the east coast in November was going to be beyond challenging compared to traveling to the west coast in the summer. The biggest drawback though is that my spasms get significantly worse in cold weather, and if I made the trip that they were suggesting, chances were good that I would have trouble moving or functioning for days afterward. I explained all of that. Every reason I felt like I could not go to the event on the east coast in November was disability related/. Their answer was “this is what we are offering.” Basically, take it or leave it. I asked if there was some way that I could attend the conference virtually, and I got the same response.
I have said many times that I would not trade what I have experienced in life for the ability to walk. And I say it again today. I will also say this. Unintentional discrimination still hurts. Even when it is by kind and well-meaning people. If I were a person of color, I could still attend this writing conference, and nobody would bat an eye. The same thing would be true if I had a different faith, or religion or sexual orientation. Even if I were blind or deaf, those disabilities could be accommodated in such a way that a writer could still attend the conference and receive the information. I know it is not personal to me as an individual, but it is personal to my type of disability. It will take some time to get over this one. The situation just doesn’t seem fair.
If someone were to suggest separate water fountains according to race in our society these days, people would probably riot. But when several people have told me this week that I could not attend this conference because the architecture of a house would not allow me to do so, there weren’t too many people who thought it was a big deal.
The irony is that my book is about respecting and including people with disabilities.
It’s one of the hardest lessons I have had to swallow. That there is a difference between reality and how things should be.