Forward by Vicki Leeper, Disability Action Center NW:
The following article broaches the subject of independence and how individual the meaning of that word is. We’ve all experienced a toddler who “want to do it for myself!” And we proudly stand back, let them work at it, watch them fail sometimes, and are understandably proud when they succeed. Or we’ve seen the teenager who defies conventional wisdom, rebels against their parents in their attempt at independence. We look on with nods of understanding, we’ve all been there, it’s a part of life, etc.
But when an individual with a disability does the exact same thing, why do we view that differently? Why is it not ok to let them try and possibly fail, to not step in until they ask for help? I feel the following personal story articulates the feelings that go on within that person, wanting to do for themselves without judgement or intervention. At some point they may ask for help, and they may not. It is important to respect that people want to do as much as they can for themselves, even if they can’t do everything. Each person has things that make them proud about being independent, things they would miss if they were no longer independent. And – here’s the kicker – what they may miss because they ARE independent and have to cope with the negative aspects of that independency.
A few weeks ago in a Moscow laundromat, a middle-aged woman approached me while I was getting my clothes out of the dryer.
Her: “Are you in any pain?”
Me, baffled, already knowing where this is going: “No, not right now. Why do you ask?”
Her: “Can I pray for you? I know some healers…”
And then, in the middle of a busy laundromat, she put her arm on me and prayed to Jesus or God or whomever that I be free of pain and healed.
Because Cerebral Palsy or disability can be prayed away and healed….except it can’t.
First of all, I’m astounded by her faith and sometimes wish mine was that strong, but I don’t know what I believe except that there must be something bigger than us out there. Faith or (non) belief in any sort of higher power, at least for me, is a very personal thing that should not be pushed on any other person. I let her pray over me because maybe it was something she needed to do for herself more than for me, whether or not either of us realized it. It was awkward but it didn’t hurt me.
Secondly, I’ve spend so long hating and wishing away my disability and everything that comes with it knowing fully well that I cannot be healed or able bodied in this lifetime. So when someone comes up and all but says that healing is possible and can happen if I just believe hard enough or pray more, it cuts like a knife.
If (your) God made me in his image, am I not perfectly made? Why am I seen as broken or in need of fixing?
And we’ll all float on.
I’ve had a disability my entire life. I was born with Cerebral Palsy, which is defined as “a condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities, typically caused by damage to the brain before birth or at birth” that affects an estimated 17 million people worldwide. Symptoms vary among people with CP, but for me it manifests as the inability to walk, less use of my left hand, blindness in my right eye, terrible balance and general muscle weakness and muscle spasms, especially in my legs.
My parents never let my Cerebral Palsy or the struggles it has sometimes brought define or consume me. They taught both me and my brother to do as much as possible for ourselves and to never be concerned with what others thought of us. My brother is much better at not caring what others think, but both of us are probably too stubborn, prideful, and just a touch salty (in the best way). My parents also did an incredible job of fostering in us a sense of independence. It is solely because of their belief in my, and despite my own naiveté, that I have come as far as I have in my life thus far. You see, I haven’t always made it easy. Remember when I said I was stubborn? Yeah, I also whine and pout and have enough anxiety and fear in me for many lifetimes. And when things get hard or I get scared I sort of just shut down and stop trying. I’ve never claimed to be perfect or easy or anything other than a flawed human, a work in progress at best.
But because of the solid groundwork laid for me, I am independent in ways some people don’t think possible. For example, I’ve lived on my own since leaving the University of Idaho dorms, which were a disaster in their own right because of my own inability to meet the expectations of others. And I don’t require the assistance of a personal caretaker. I also use a manual wheelchair on my own, although I am not against others helping me if they want to. From the outside, I live a pretty normal life – hell, even a good one. And it truly is a good one, but it’s not without struggles. Like everyone else, I have to contend with relationships, health, work, school and other parts of life, in addition to things that only those with disabilities have to contend with. These are things like access and accessibility, mobility devices, abolish and internalized abolish that severely impact a person’s quality of life, mental and physical health and independence.
My greatest fear isn’t death or losing a loved one but rather losing my independence. Change is terrifying and I feel like I’m approaching a point in my life where I’m going to have to make some big, scary changes soon. Thus far in life, I’ve managed to survive on my own and, when needed, with the help of family and friends. But it has increasingly been suggested that I get a caretaker and motorized wheelchair to help maintain my independence. Except those things feel like me losing everything I’ve worked so hard to gain. My parents chose to have me use a manual wheelchair so that I wouldn’t need to rely on others to help me get where I needed to go. Similarly, I was taught the basics of cooking, cleaning, and other adult responsibilities so that I could do those things independently; so I can live independently.
But what happens when it gets harder to push myself? What happens when it gets harder to do certain chores and keep a house that lives up to my mother’s and my own standards?
It’s not much different from Kubler-Ross’ five stages of grief when contending with a terminal illness or death. Except instead of grieving death or terminal illness, I’m grieving my complete independence and the idea that I can do everything on why own. I have to learn to accept and embrace my disability and the struggles and potential loss of independence that may come with it.
As a child, I was naive toward my disability. I mean, I knew I was different and that I couldn’t walk without the use of a mobility aid or at all, use my left hand well, or see out of my right eye. But as kid, those things didn’t really matter. I lived such a typical, normal childhood, with the exception of a few more surgeries and hospital visits than the average child, and was surrounded by so much love and support that I was too occupied being a kid to let my differences get in the way too much. Unfortunately, puberty and adolescence are good at bringing death to naiveté. As I got older and wasn’t included in or physically couldn’t participate in so many normal adolescent activities because of my disability, I realized for the first time that my life did have limitations and wasn’t going down the trajectory I so desperately wanted it to follow.
See, in my head, my life path went something like this. I would graduate high school with good grades, a boyfriend and a car. I would go to college somewhere far away where I’d continue getting good grades, make tons of friends, and have the most incredible experiences before graduating somewhere at the top of my class and moving on to get a great job as a journalist that allowed me to travel. Somewhere along the line I’d meet my soulmate and we’d live a white picket fence life in our dream house with our three kids and two cats. Obviously, none of this has happened. I did graduate high school and college (barely) but that’s where the similarities between my fantasy world and reality ended.
What I didn’t realize until after my life had significantly veered off course was that in my fantasy world, I didn’t have a disability or if I did it didn’t affect my life in any incredible way. This is denial. And sometimes I find myself still living there. It’s comfortable and warm and doesn’t hurt me.
Where there is denial, anger will follow. Anger and I have an interesting relationship. I feel like I don’t experience anger like the majority of people. It’s a very rare thing for me to feel anger and when I do it’s usually towards myself and whatever way my body or (in recent years) my mind have failed me. If I fail to get in my wheelchair the first or second time because my brakes are worn out and need replaced again or I can’t get past the terrible crack in the sidewalk or up a hill because I am not strong enough or I’m moving too slow (always) or myriad of other reasons, the disappointment in myself and my abilities rises. I’m not sure when or why this coping mechanism came to be, but I’ve made a habit of burying my anger and sadness and pain deep down inside of me so that on the rare occasion it bubbles to the surface, I reach full-on hysterical meltdown over whatever tiny thing pushed me over the edge.
Bargaining is the third state of grief, and it involves much negotiation. For me, bargaining occurs most often when someone says or does something to remind me that so often I and others with disabilities are seen as only inspiration porn or needing fixed or lesser than in some way. We’re expected to overcome our disabilities and persevere in a world not suited for us. Oftentimes, we’re raised up on a pedestal like a martyr. So when we’re seen simply being human, whether we’re having a drink with friends at our favorite restaurant or bar or traversing from one place to another by ourselves or even doing laundry, people stare or worse (like the woman at the laundromat).
I am one of the more than 300 million worldwide living with depression. Depression can be the result of many things including a chemical imbalance, trauma, genetics, certain medical conditions or illnesses, death or loss of a loved one, substance abuse and an endless plethora of other human experiences and conditions. For me, it’s the result of a chemical imbalance, trauma, genetics and my disability, for lack of a better way to put it. Unlike my naive younger years, I know that having a disability means my life will seldom go according to plan. I know this because things stopped going the way I wanted them to a long time ago. On and off since I came to Moscow for school 10 years ago, everyone from complete strangers to classmates to friends and professors and administrators have at one point asked or told me that I need something, varying from a motorized wheelchair to a caretaker to not living independently or to not be here at all, either outright – or not in so many words directly to my face or behind my back. I want to believe these things are said out of concern or because they want to see me “better,” but that doesn’t mean it doesn’t hurt.
It doesn’t mean part of me doesn’t wonder if it’s all out of pity. If I could wish away my disability, I would have done so years ago. If I could make things easier for me, but especially for those around me wherein it concerns me, again I would hav done so forever ago. This is the part where everyone I know and don’t know screams in unison “but it can be easier if only you’d….” The two biggest questions or complaints I hear, depending on who they’re coming from, are:
“Why don’t you have a motorized wheelchair?”
“Where’s your caretaker?” or “Why don’t you have a caretaker?”
First of all, I hate that I repeatedly get asked these questions because it’s nobody’s business except mine. Yes, I might be stubborn or ungrateful or just prolonging a miserable existence, but mostly I’m scared. I’m scared and fearful because while everyone says getting a motorized wheelchair or caretaker to help will only increase my independence, to me, it feels like losing my independence.
I’m not trying to hurt anyone’s feelings by so adamantly refusing these things. I just want to be 200 pounds skinnier and have better mobility and energy without having to exchange everything I have ever known. But since it’s not likely I’m going to ever meet those expectations, I’m trying to find a place where everyone can be happy. Because even though I shouldn’t have to answer to anyone, it’s hard not to in this town. Can someone please just tell me that if I do what everyone else wants and get a caretaker and motorized wheelchair that I’ll still be able to do what I please whenever I want and with or without whomever I want? Because right now, I feel powerless and scared and like a child being told by all of the adults in her life that they know best and her feelings don’t matter.
The final stage of grief is acceptance, but I’m not there yet. I’m not sure I ever will be. I’m scared of what the rest of my life looks like, friends. Please tell me I’m not a failure and that it’ll be okay.
Home and Harvest Magazine Editors Note:
I have published this piece as-is. Ashley was unsure about the ending, and at first I wanted her to write something courageous as well. But what is courageous? It’s telling the truth. It’s being brave enough to tell your story, as Ashley has done, in hopes that it will help someone. She knows she’ll be ok. She knows the truth is she’s not a failure, but her inner critic along with her aforementioned grief likes to steal her power from time to time. But haven’t we all been there and felt that way?
Ashely, you are not a failure and it WILL be okay. Why? Because people like you are brave enough to share their stories…stories that will ultimately change the world for the better. Than you for being the change we wish to see in the world.