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’ve talked about living as an artist and using everything as a medium to create something more beautiful. There’s so much we don’t have control over. We can chase a dream and watch it slip away. But that’s not always a tragedy. I’m thankful for all the plans I fought for that never came to fruition. I learned a lot in the process, and made discoveries that have led to greater self-expression. Every time my heart broke, I became less attached to each pursuit. Yet every one is always a part of me, accessible at any time, to apply how I want, creatively. I am forever an explorer, putting my whole soul into the journey. At the end of my life, I may not be successful in anything in terms of reaching the highest pinnacles or making the most interesting contributions. But I will have molded myself maximally, utilizing the environment around me to my fullest potential. I will be, within myself, an achievement in having lived. As far and as widely as I could. As deeply and passionately as I dared. Sure, I’m afraid, fragile, weak, sad, broken, and scarred. We all are, some are just more honest about their humanity than others. But I’m also powerful, loving, victorious, and untamed. It’s how you channel it. How you use that energy to fuel what you know in your heart you must do. To be happy and alive.