Letter to a Personal Assistant

Those who know me are well aware that I rely on the assistance of others to help me with activities of daily living, from using the bathroom to combing my hair and buttoning my shirts. Needing help in so many aspects of life is a mixed blessing. On good days, it has shown me the immense power of looking out for each other. Through caregiving, I have met some of the kindest people I have ever known. On other days, it's beyond frustrating to have to sync your body functions with other people's schedules. To hope that a person you've trusted with the most intimate aspects of your existence doesn't put social plans above your need to take a shower. To hope that such a person doesn't use your need for physical assistance to assert power over you. I don't write about this to ask for your pity or to make you believe my life is a misery. I have a great life, in spite of and because of my disability. I merely want you to consider that it is a gargantuan task to every day put your life in someone else's hands, in the most literal sense. 

Out of necessity, I must invite others into places and spaces you thought were sacred. Every trip to the toilet. Every early morning when my hair is a mess and my retainer is still stuck to the roof of my mouth. Every time I take a shower, even on days when I might like to let the water run, sing badly, and be alone with my thoughts. Sometimes, as I let the water wash over me, I do have a moment of solitude in which my body is nobody's introduction to the health professions. Nobody's "are you done yet?" or "are you sure you want it that way?" But when that moment passes, there's reality, and someone to instruct to scrub between my toes. What I'm describing is why so many people fear old age and disability. The idea of entrusting the processes of our bodies to someone else seems like it lacks dignity. But here's the thing. It doesn't have to. 

There is tremendous dignity in caregiving done right, in recognizing that all people need each other. As much as I would love a "carefree pee," unassisted and unaccompanied sometimes, in those moments of dignity I feel lucky to understand the beautiful gift of interdependence and to speak frankly, not squeamishly about the human truths of what it takes to keep a body and spirit in motion. That said, it is one of my personal missions to help others understand the enormous responsibility of caregiving and to ensure that everyone knows what it feels like to be assisted without having to feel anxiety, or guilt  or to fear being perceived as a burden to others. These are emotions I struggle with from time to time, as I'm sure all who rely on caregivers do. But when someone cares for me respectfully and on my terms, I feel so much peace. It's like the whole world says "I got you." 

That said, I want to share the letter I normally distribute to my staff of personal assistants (PAs). Maybe you're in caregiving. Maybe you're not right now, but you will be. Maybe you never will be. But no matter who you are, I hope this letter will make you think and perhaps say to another person, "in whatever way you need me, I got you." 

Dear Personal Assistant,

I like my shoelaces double knotted and my hair parted to the side. If you’re putting on my jacket, it is best to start with my left hand, which in all its gnarled glory possesses a certain omnipresence in photos like that relative who creeps in the background every time there’s a camera around. Buckle my feet in tightly or I will unintentionally kick you. These are some of the things I would tell you if you were assisting me. These are some of the ways that my disability colors every aspect of my life. I was born with it, it has shaped my being, and I would not trade it for the world. This is me and I have faith in my design. However, that does not mean it always feels fair or easy to need help with so many things. To those who can care for themselves, it is natural to take these things for granted. I do not expect you to understand fully what it feels like to live with a disability. But I’m asking you to listen, so perhaps we can better see through one another’s eyes. There are days when I feel like my life is a shift. The constant devotion of my old pal palsy has forced me to become a psychic; my carefully planned schedule means I can probably tell you when I’m taking a shower, not just tonight, but for the next three weeks. At least once a day I have a skit like moment when I think, “What do you mean, plans at 2:00? Everyone knows that I pee at 2:00!” As much as I love having an intimate affair with my pager, it can be an incredibly vulnerable feeling to know that the pager is my only connection to a set of hands to pull me out of bed. What I am getting at, I suppose, is that you have accepted an incredibly responsible job. I thank you from the bottom of my heart for taking it, but this being said, remember that your presence, and your absence, for the matter, affect my whole world. This job may be more tiring, more challenging, more physically and emotionally demanding than any other job you will ever take. Sometimes it will mean putting off plans. But I ask you to be gentle with me, and to realize that I too have many things to juggle. Sometimes while I juggle, I look upward toward a higher being and think, “Juggling?! Seriously? You only gave me one hand that works!” Coordinating my care in addition to the regular tasks of life is exhausting, and I know that taking care of me is no cake job. But I can laugh at almost anything, I love to sing in the shower, and I tell good stories. I do my best to give you something in return for your time and I hope that this can be a situation of interdependence rather than just one about “helping” me. It does not always feel fair or easy to need help with so many things, but when you assist me with patience, humor, and commitment, it fills me with peace and makes juggling seem possible.  My favorite color is orange. I love the smell of rain. The things that I can do on my own; those moments when I’m rolling solo on a sunny morning are intensely freeing and beautiful. I am someone’s child, someone’s sister, someone’s best friend. I am human. These are some of the things I would tell you if you wanted to see my person and not just my “needs”. Since you’re going to be tying the laces each morning, every so often I ask that you put yourself in my shoes.

Always in peace,

Kathleen

Spotlight on the #LiveOn Movement

I've had the honor to become involved with an amazing suicide prevention movement specifically for people with disabilities called Live On. The project was founded by activists Dominick Evans, Leah Smith, and Julie Farrar to build a network of peer support for people with disabilities and to connect them with "resources they need to live on." Thank you Dominick, Julie, and Leah for your powerful leadership.

According to their site, "The Live On Movement is a disability-led project for people with disabilities to see how worthwhile life is. Life can be hard sometimes, and this is even more true for people living with disabilities. Young people with disabilities face bullying, youth and adults with disabilities can be forced into nursing facilities, and plenty of people and businesses still discriminate against us every day. Whether you were born with your disability, your disability has slowly progressed as you grew older, or you suddenly acquired your disability, the challenges you face are real. But you can get through them! Some people do not think they can get through the challenges they face, and some people may think there’s no way to live a happy, fulfilling life with a disability, but we know that’s not true. The Live On Movement was created to show people with disabilities the incredible lives they can lead, and all they need to do right now is choose to Live On.The mission of the Live On Movement is to show disabled people everywhere that life is worth living and to connect people with the resources they need to Live On." 

Mental health issues are stigmatized, even in the disability community. We need to speak out and encourage those who are struggling to seek help. Ableist biases affect our access to appropriate mental healthcare. According to disability rights activist Rebecca Cokley, 

"Mainstream society reacts differently to disabled person killing themselves than a nondisabled person. When a disabled person commits suicide you typically respond with “well, now they’re in a better place.” Or “God has made little jimmy walk now (If Jimmy used a wheelchair.)” Even when eulogizing a disabled person nondisabled people find it appropriate to erase their disability or minimize their difference ‘he was small, but the biggest person I ever knew’ or ‘In Heaven everyone is beautiful.’ You even have the audacity to attack us, DISABLED PEOPLE, when we encourage a person with a disability to get the help and supports they need to live instead of kill themselves."

Through the Live On movement, we strive to give disabled folks the tools to live instead of the tools to die. Recently, Dominick invited me to share a letter describing how I #LiveOn and why this movement matters to me. Many of you have seen it on Facebook, but my letter is below for those who need encouragement.

Dear Disabled Friend Who’s Feeling Lost, Frustrated, and Forgotten,

I hear you. I have felt the emotions you’re feeling right now. It’s true that the world can make life difficult for us. It requires real energy and real strength to navigate a society that’s not quite designed for us and it’s absurd that looking for an accessible public bathroom is still a scavenger hunt. I know what it’s like to just feel tired. Tired of waiting for caregivers to show up. Tired of filling out mountains of paperwork just to get basic services. Tired of answering (or trying to ignore) strangers’ invasive questions about your disability. It’s okay to feel tired and to acknowledge that some of these realities just suck.

But believe me when I say life with a disability is worth living. I have already accomplished more than I ever believed possible, and so can you. I went away to college nearly 900 miles from home. I hired my own staff to help me with daily care tasks through a program at my school that helps coordinate personal assistants. Some days were a challenge, but it was all worth it. It was so cool having my own dorm room and being able to call home to share my adventures. I graduated with a bachelor’s degree in community health and I liked my school so much that I am now back there getting a master’s degree in social work. If someone had told me all this were possible when I was a shy, lonely seventh grader hiding in the elevator before the school bell rang, I wouldn’t have believed it. But sometimes, dreams come true.

I know it’s easy to feel like your disability only brings “The Bad.” Getting stared at, discriminated against, treated like you are invisible…all of those things hurt. But my disability has also brought me a lot of awesomeness. I met some of my closest friends through places and spaces related to my disability: summer camp, physical therapy, an adapted dance class…the list goes on. Whenever I feel sad about my disability, I think of all the amazing, kind people it has brought into my life and that nearly makes my heart burst with joy. Being disabled has sharpened my sense of humor too, and I often tease my friends that if I didn’t have cerebral palsy, I’d run out of hilarious material for my someday autobiography.

You matter. You are not a burden. You don’t need to walk or talk or hear or see or think “like everyone else” to be valuable. Never apologize for the help that you need, the space you take up, or the extra time it takes you to do things. You have every right to be exactly the way you are. If you don’t believe me right this minute, you can get there. As my activist role model Laura Hershey once wrote, “being proud takes practice.” But don’t give up… and know that even in the moments when you don’t feel proud of you, I sure do. Better days are coming and I can’t wait to see you kick some butt. My squeaky purple wheelchair and I are forever cheering you on.

#LiveOn, my friend. You’ve got this.

Much love,

Kathleen

If you or someone you care about would like to write a letter or seek resources to Live On, please visit www.liveon.net A comprehensive list of resources can be found here. Karin Hitselberger of Claiming Crip also lists some helpful suggestions for non-disabled folks supporting a loved one in crisis on her blog. You matter. We need you. I need you. Challenges are real, but so is hope. Live on.

Follow Live On on Facebook

Disabled Folks, You Inspire Me. Yes, You Read That Right.

As disabled folks, we learn early on that the business of inspiration is tricky. "Inspiration porn" permeates our culture, that is, the media that calls us “inspirational” and “courageous” just for being in the world. Society wants to call the local news channel when people without disabilities befriend us. Inspiration porn is damaging in multiple ways. It perpetuates a set of low expectations for disabled people and makes the manner in which we exist the hurdle to clear, rather than the countless ways society is designed to exclude us. Marking us as “brave overcomers” of our own bodies is an easy way to hide the fact that there would be much less to overcome if places and spaces were built to welcome us—in terms of both physical architecture and the attitudinal architecture of inclusive love.

But I think in the effort to avoid the understandable grossness of the patronizing, “get your Kleenex for the poor crippled people” style of inspiration, we disabled folks have lost the vocabulary to talk about the “good kind of inspiration”—that is… recognizing and celebrating the ways that we motivate each other, build each other up, and push each other forward. The ways we inspire each other—not in the “you get a blue ribbon for drinking chocolate milk” way, but rather in the way that makes us say, “I see power in you.” So, in that spirit, I’m going to take inspiration back… and say something that tastes strange in my mouth: my disabled brothers and sisters, you inspire me.

I draw enormous strength from the guidance you give me. The camaraderie I witness among us, from tips about the best type of wheelchair tires to serious discussions about long- term care, is necessary and life-giving. From my fellow disabled folks, I have learned just how much the human body can adapt. From friends who write with their toes to friends who use their crutches to fish shoes from under the bed, the people in the disabled community have revealed not weakness, but a sense of innovation… and an enormous capacity to persist and resist in a culture that depending on the time and place has called us “useless eaters,” “benefit scroungers,” and  “drains on society.” To be disabled is to be brave, but not the kind of brave that writes tearjerker TV episodes or warms people’s hearts on the morning news. I’m talking about subtle courage. Quiet courage. The kind it takes to be proud in a culture that calls you broken. The kind that would make those morning newscasters feel a little uncomfortable. That kind of courage doesn’t happen overnight. As the late activist Laura Hershey wisely told us, “you get proud by practicing.”

 Being with other disabled folks, who teach me to bend instead of break under the weight of bureaucratic paperwork, gawking strangers, and the perpetual threat of service cuts, makes “practicing” an almost holy act.  When I look around at those, who like me, are navigating the world in a disabled body, I see people who are almost poetic in their mastery of survival. When wheelchair lifts break and buses don’t show up, and personal assistants with whom we have trusted our most basic human needs fail us, we endure. We fight back. Sometimes, fighting back means chaining yourself to a fence to protest policies that try to put our brothers and sisters in nursing homes. Sometimes, fighting back is as simple as refusing to apologize for the space you take up, the help that you need, or the slower pace at which you move. It’s learning not to say sorry for your own bodily functions, because yes, you need to go to the bathroom again.

It’s confusing to me when people imply that my disability is not a part of me. In a literal sense, the pulse of overzealous electricity that bounces between my brain and my muscles has carved out a crooked house for my spirit. It’s hard to imagine anything other than a shoulder that tips to the left and a hip that juts to the right, a body unsure which way to be pulled. It’s hard to imagine a life without long, spindly fingers and a thumb that tucks stubbornly between two fingers when I concentrate very hard. Beyond what is physical, my disability colors my thoughts, my humor, and my dreams. It is impossible to extricate it from the soul inside that crooked house. And if it were possible to do so, I’m not so sure that’s what I would want.To my fellow disabled folks, with differences both visible and invisible, with muscles and bones and minds and spirits that dare to “be” in a world unkind to them, how could I regret this life when it gave me you? 

Inspiration has evolved to be a dirty word in our circles. So has courage. But you inspire me in the best way and you give me that quiet courage I talked about before—the courage to love myself fiercely when the world doesn’t always love me back. To know that even on days when it feels that way, my worth isn’t determined by my ability to tie a shoe, or walk a step, or take a shower on my own. My friends, my “family”, my “brothers and sisters by circumstance,” thank you for all of these things. 

I see power in you.