A lot of times when I tell people that my daughter has cerebral palsy (CP), they respond with all sorts of reactions and usually seem to feel really bad about it. One person recently meant to be nice, but said she basically wouldn’t be able to get out of bed in the morning if that were her. We actually laughed about it because it’s so far from our reality. Society unfortunately sees disability as a tragedy or problem, and that you can’t live a good life. That is so far from the truth. My daughter has had a great life. It has been rough at times, and a lot of it is because society doesn’t get it. As a parent, what has been most difficult is the lack of support, especially as a single parent. It’s been the two of us against the world. The attitudes out there are suffocating. And we know from experience that community support is essential. That’s why it’s important that we promote accessible, affordable healthcare. There are community programs that are critical to living a quality life with opportunities. The reason my daughter has had a good life is not because it’s been easy, but because despite all the obstacles, she has been able to do what she wants and become the person that she is meant to be. We both appreciate all the work that people have done to create a more inclusive society, and we talk about this a lot. Of course there is still a long way to go and a lot of it will come from changes in perception and attitudes. Using a social model, we may challenge barriers, rather than focus on the individual as somehow less human. Every one of us needs different types of community supports, whether or not we are aware of what they are. We just haven’t typically expanded support to accommodate disability. We change buildings now, like doorways and ramps. But not all disabilities are physical and some of the newest changes have been in technology and content development. Society has typically served a very narrow segment of the population and that is part of the reason that society is comfortable with only a subset of certain diversity spectrums. We can open our minds to consider much more variety of human experience. Then maybe we won’t feel so bad when someone else’s life is different from ours.
I remember the days when I had Imani sleep on my chest so she wouldn’t forget to breathe, which happens with babies born very premature (14 weeks early). I remember the days when I felt my heart strings tugged when I watched her ride off on the school bus, and the joy I felt seeing her emerge from the bus when she arrived back home. And now are the days when she is galavanting around her college campus, becoming grown, finding herself, and making her way in the world. And later will be the days that I will miss those days.
I’ve been working on my first book, which is coming along pretty well. I have several advisers and reviewers. And I’ve shown the manuscript to quite a few people already. I don’t have a release date, but it’s any day now. It will focus on the socioeconomic impacts of disability and poverty from the perspective of a single mother. Hopefully it will educate people about some of the challenges the parents and single parents have raising children with disabilities in the community.