March is cerebral palsy & developmental disabilities awareness month, in which we—as disabled people, abled people, researchers, clinicians, physicians, etc— aim to provide and spread information and resources about cerebral palsy and other developmental disabilities. This is a passion of mine, not just because I am a disabled person, with cerebral palsy, but because it is simply important and Ignorance is not bliss.
Every year, CP awareness month has deeper meaning and different focus for me. Today, I intend to share with you my focus and what it means for me this 2017 year.
I was born with/am diagnosed with spastic quadriplegia cerebral palsy: spastic referring to increased muscle tone(hypertonic muscles) which causes my muscles to be very tight and stiff a and quadriplegia referring to the fact that all my limbs are involved. Read more information on cerebral palsy here: cerebralpalsy.org
For me, This year, the focus of cerebral palsy awareness and the meaning that it takes is the importance of being "proactively fearless." I define this as being active and, especially, fearless in my pursuit for understanding and resources as well as being proactive and fearless in pain management, in facing my emotions and being transparent about my questions, issues, and needs.
As an adult living with CP, I have and often, still, struggle with making sense of what my body is doing and/or supposed to be doing as I continue to age. For most of my life, I set out to prove myself to the people around me and to the world that I am just as normal as everyone else. I honestly expended so much energy in trying to force my body to function as other able bodied individuals around me and I spent much energy in trying to dispel the stigma around being disabled. For instance, When I would go out and about with family or friends, I would push myself to walk faster, or walk past my distance limit and then go home to a private struggle with pain. When I needed help, I failed to articulate what I needed because of pride but also because I didn't even understand what it was that I needed.
Since, there is minimal research on aging with CP, growing up has been shadowed with confusion, silence, and frustration. When I was in high school and it was time to learn to learn to drive, I girded myself in pride and said, "well I'm just like everyone else, I can do this" and failed to make my body operate like I wanted it to, which ended in a traumatic and shameful experience that I kept quiet on for years. It took me a long time to heal from that and to be able to tell myself that, it was okay; It was okay, I don't have to be like everyone else, I never had to and never needed to prove myself.
It wasn't until I was boiling over with frustration, and a peculiar type of denial and shame that I learned of a special driving school for people with disabilities. Growing up my mother had always taught me to accept myself and love myself; however, after many years, I had to re-accept myself as a disabled individual and accept that there are resources available to me and there is no shame in using them. Did I ever learn drive? no, not yet, but I am ever more proactive in my search for what is out there for me and I don't need to fear the feelings that rise up in me during my pursuit.
I spent so much time proving I was normal that I was rejecting myself as I was. I was afraid because I felt like I was and would be going backward, backward into the stigma of being seen as helpless or in constant need. When the truth of the matter was that, both abled and disabled people are people who are in constant need. We always need and will always need help, support, resources, etc, and thats okay. I had to tell myself, no more. I had to say to myself (and the world), yes I have CP and it's okay. I had to say, yes I can do this and that, but be not afraid to say, I am tired today and I can't today. I had to embrace CP with love and that didn't mean or does mean that I have to like it.
There are days when I am exhausted, there are days when I am in a lot of pain , there are days when my legs beg me, "no, please don't make me walk", and there are days when I am angry at my body. As an adult I have and still struggle with making sense of all that. When I looked for a job after college I felt like a failure because I couldn't work at just any job. I knew that but that didn't make it easier. As people who are disabled, sometimes we need accommodations and it is our right to ask for them and be granted them as long as they are reasonable; however, how was I/am I (/are we) supposed to ask for them if I(/we) don't even know what I (/we) need?
I struggled for a long time not knowing what I needed and sometimes I still do. Sometimes my needs change. Sometimes I may feel like I know what I need and someone might say, "oh no, you don't need that." How do I as a person with agency and who knows my body better than anyone else reconcile that? how do I balance what I think is best for me and what someone else, a physican for example, says may be best for me?
This is where being proactively fearless is needed and needs to be ignited. In moments like this, I am and should and need to ask for a second opinion or third if need be. I need to say what I feel or ask questions, when I have them, even if I am talking in circles and not making any sense. I need to be fearless and listen to my body and always be in pursuit and never give up on my pursuit of what I need. That's what this month is about. Its about being aware of my heart and body and expressing and sharing what I know and don't know, asking questions, and acquiring knowledge.
It's saying look, I am me and I am disabled and yeah, this thing has medical definition but that definition is not a rigid container around me. Sometimes my body might do something that I don't know that its supposed to do that. As I age with CP, are there things I need to be aware of ? I must probe that. Sometimes literature and research says, your disability is this and this is what your body does and will do as a result of it, but your body might do something that isn't described in the research or literature. what then? Be proactively fearless. and that's what it means for me this year and always. It means, I don't fear you CP, nor do I fear you body, and I don't fear you research either. I will listen, I will probe, I will manage, I will take care of myself the best I can and I will love myself even when I have days and moments of liking myself.
Sometimes people say things like, "oh, you don't look disabled" and sometimes people notice and say things like, "why do you walk like that? why are your hands like that? what's wrong with you?" And both of those things are a struggle, yet being fearlessly proactive or proactively fearless I am constantly learning and steady being. I am learning to say, "hey look, I have this and its okay." "Sometimes I trip and fall out of nowhere, my body does that, its fine." or "I walk really slow, so please be patient" or "Can you do this for me please? or help me with this" Sometimes Its saying, hey, disability doesn't have a look, it's not a look, its just a title, its just a flexible, gooey definition. But this is what I have and I am here.
Sometimes its saying, (not just verbally but in our daily act of living) hey, no I may not be wearing orthotic braces or in a wheelchair but I am still disabled. or I am in one and I can't do this or that, but I am still here and beautiful and talented and abled. Sometimes It's saying, no, I can't do that and its okay, or I can do that but I need to do it in this way. It's I am here and searching. I am lost and found. It's hey, Im not 6 anymore and my mom isn't here so I must pursue and seek people who can back me up. Or It's I don't go to physical therapy anymore, but can you offer me some exercises I can do at home? It's I'm going to take this mat Pilates class at NYU'S Initiative for Women with Disabilities. I'm going to see what's out there. Sometimes, It's I hate my body today, can you give me the number to a social worker or counselor. It's, sometimes, that doctor didn't help, do you know another one that may be more helpful? It's saying, I have this but it doesn't have me, and even when it hurts I'm here.
Cerebral Palsy awareness month (and everyday) is being proactively fearless in love. It's standing up for myself and advocating for myself as well as others. It's I'm hurting and healing at once, I am staying the same and changing at once. It's I am not here to serve as your inspiration but I am here to be me and I have a purpose and a destiny.
It's we are the same and different at once. It's I'm going to meet someone else with a disability and hear their story and I'm going to tell my story, over and over, everywhere and always.