Whenever I tell someone new that my dad has MS I brace myself for the response I’ve been hearing as long as I can remember, “Oh, I’m so sorry, that must be so hard!”
I know that they mean well, and I appreciate the sentiment, but all I hear is pity; that they think I’ve missed out on something. That my life has been marred in some very important way by my dad’s illness. Certainly there are difficult patches, but sympathetic responses change the terms of the conversation; it’s no longer a story about my dad I’m telling, but about my *disabled* dad. This shift in tone is often so uncomfortable for people that I end up diverting the conversation, always keeping in mind that a lot of my life stories—many of the moments during which I have felt closest to my dad—will create too much awkwardness for the other person. This interaction is not this other person’s fault, nor is it caused by my insecurities or shame, but sometimes I don’t have the time or energy or words to get into *it*. Yes, I’m sure there are many advantages to having fully able-bodied parents, but there are also things you miss out on if you don’t have a disabled parent.
I usually respond with “Don’t be sorry! He’s not. We’re not!”
But what I want to tell them is a story about me cleaning dried blood off my dad’s toes—from bumping into walls without shoes. Sometimes I’ll put too much alcohol on the wound and even after a lifetime of experience I’ll say, ‘Oh no! Did that hurt!?’ To which, he’ll give me a little chuckle, and with that silly glint in his eye that tells me that he doesn’t have a migraine, he says, ‘no I didn’t feel it at all.’
I want to tell them how easily my dad can smuggle taco bell into the movie theater: nobody’s checking his wheelchair for chalupas. We’ve both benefitted from this during epics like The Hobbit.
I want to tell them that my dad got a new sling for his Hoyer lift that makes him look like a ninja turtle when he’s suspended, and also that when I wrestle it out from under him once I get him in bed I’m surprised if a peanut M&M doesn’t pop out.
I want to tell them how much I used to look forward to helping my dad organize his pills once a week into their compartments. And how I would be unhappy if there were only white pills in a compartment, I liked the orange, green, yellow, blue, purple, and red pills to add pops of color.
But those stories, daily life for us, would be classified under the heading of “dark humor.” So I stay away.
I wish I could explain to them that the moments I’ve felt closest to my dad are when I’m cutting his toenails, cleaning and dressing his wounds, putting lotion on his feet and legs, dressing him, pushing him in his broken power wheelchair through the icy snow, transferring him into bed, catching him as he slips, feeding him. These are the moments of closeness that don’t exist in able-bodied relationships.
I wish I could explain that in these moments our bodies are caring for one another; a kind of intimacy not usually afforded to a father and daughter. It’s not just that I am some selfless daughter who’s always by his side (because I’m not). It’s the love I feel because I have earned the right to take care of him.
I know the intricacies of his body; I can tell how bad his headache is by how low his eyelids are; I know in what position he sleeps, where the pillows go, and how many blankets he needs; I know what color, temperature, and texture the skin on his feet and legs should be; I know the frustration on his face when he can’t hold his hand steady enough to feed himself; I know that the next time I see him these abilities may have changed; I know the tone of voice he uses when he hasn’t had a headache all day; and I know that when I ask him, ‘dad are you okay?’ he’ll probably answer, ‘No, I have MS.’
I’ve learned to be conscious of his body in space in relation to my own; where to put my arms under his shoulders to help him sit up straight; how to slip my hands between his back and wheelchair fast enough to pull down his shirt when he pulls himself over, how to move his legs gently enough when his arthritis flares up; how to dance with him; and all the different ways to hug him.
When I take care of my dad I don’t just feel love *for* him, I also feel love *from* him. In loving me, in trusting me to take care of his body, he’s trusting my body to take care of his. He’s in a vulnerable position swinging in his lift, but I know that he respects and trusts me enough to get him into bed safely. I know that not just anyone gets to do this.
A symbol is something that stands in place of something much larger. For me, the 3E symbol represents all these things that I wish I could say to the person who is ‘sorry about my dad.’ I don’t resent them, I just wish there were words to explain why I have MS to thank for the strength of our mutual love and respect. That in my family, a wheelchair does represent love. That’s just how we roll!
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What is January 20th?
This January 20th is the 5th Annual International Day of Acceptance, a day to promote the social acceptance of disability and to honor the late Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance (wheelchair heart symbol). To learn more and get involved, visit www.DayOfAcceptance.com
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Powered by WishpondPeace & love to you all,
Lauran Mayeaux
I hope to share more of 3e's heart & message as I go along life's way.
With my troupe Mystical Misfits in the beginning stages, I hope to attract more differently abled performers to tell their diverse stories in performance art. Two projects are in development. Gender Gifted Conversations, inspired by Eve Ensler’s Vagina Monologues, will be an interactive piece about bodies and gender identities. Differently Abled Hearts has a similar format, but its focus will be how people with various disabilities cope with stereotypes and marginalization while living their lives. I want to focus on relationships with family, friends and lovers in Differently Abled Hearts. This piece honors my mother, who has an invisible disability.
I relate to honoring a loved one with a creative cause. My soul mate friend, Carl, who was like a brother passed away in 2009. We shared the challenges of disability, but his challenges were life threatening. Mine are not, and so I live for both of us. I am fortunate to be fully physically healthy and emotionally functional, and I will be closer to full mental health once I actualize my creative goals. In his next act, my character Rio, a blend of myself and my friend Carl, moves beyond acceptance toward aspiration and self-actualization. He is embracing, empowering and educating as a catalyst for change, opportunities and freedom, one word and gesture at a time.
I love the 3E Logo, especially with the words embrace, empower and educate added. I myself have never used a wheelchair, but I know what it is like to be socially defined by my limitations. I want to connect with positive minded, ambitious, educated and active people who are committed to changing the social perception of disability in a deliberate, continuous and comprehensive empowerment movement. Let’s honor independence, equality, transcendence and perseverance, creating opportunities beyond mere acceptance for ourselves and our allies.
We set out on an adventure this past fall to adopt our son from Ukraine. Denis was born in Berdyansk, Ukraine in 2009. His birth mother abandoned him at the maternity hospital there, and 5 months later he was transferred to the orphanage 3 hours away in Zaporozhye. He is a cute little guy, with bright red hair and dark brown eyes and an infectious smile. He was also born with spina bifida. His mother did not have the means to care for his medical condition.
In Ukraine, babies with special needs are routinely abandoned at the hospital and given to orphanages. The parents are told that the baby will get free medical care there, but the truth is, the babies spend all day every day in cribs. The parents would be ostracized from every part of society--they would not be able to find child care for their child, so they would lose their jobs. Family members would refuse to help them.
I was shocked that how rarely we saw a person with a disability in Ukraine. It didn't take long to realize the reason why we didn't see people with disabilities is because they are warehoused in orphanages and institutions, hidden from the society that threw them away from birth. In the orphanages there are thousands of beautiful children laying in beds and ignored. On the rare occasion we did see a person who was differently-abled, that person was ignored by the people around them. There were no ramps into businesses, no placard parking, no buttons to open doors, and no one stopped to help. We saw a young man in McDonald's who happened to have Down Syndrome, and I smiled and said "Privyet!" (Hello!) and he smiled back and said "Privyet!" back. He honestly looked shocked that anyone would talk to him!
At our son's orphanage, in his groupa, there were 18 children being cared for by 3 nannies. Denis was one of the more able-bodied children in his groupa, so he had to fend for himself more. They would not let him out of his crib because his legs got broken many times, due to malnutrition. He was in a "good" orphanage and was in "good condition" compared to some places and some kids my friends have seen. More than one friend of mine has brought home children with Down Syndrome who weighed less than 15 pounds at 5 or even 10 years old! One friend of mine brought home two teens this past summer, one girl with CP and a boy with spina bifida. The girl tells her mama about the nannies spitting in her face and calling her disgusting. They would put pillows on her face and tell her they hoped she'd just die, knowing she could not pull the pillows off by herself. The boy has legs that are damaged beyond repair, intentionally broken multiple times by the people who are paid by the Ukrainian government to care for him.
In Ukraine, these children have no value. Their post-soviet ideals still hang in the air and they treat those with disabilities as less than human because they are a "burden to society". They get the bare minimum in terms of food, medical care, and human contact.
In America, our positive social image of people with disabilities means that we were able to adopt our little guy and get him the help he needs. It means that our little guy will have the same opportunities as his four sisters, opportunities to get an education and to have a family and a career. Maintaining this positive image means that more babies will have the opportunity for LIFE, as more parents choose to have their babies rather than abort them out of fear of the unknown. It means that more parents will choose to adopt children who are born in countries that don't value them because we know we have the support from people around us.
Before becoming involved in the disability community, I was lost and I felt alone in my majority able-bodied world. However. upon my discovery of the disability community, I found strength and love in myself and those around me.
The 3E Love symbol brings the love, strength, and sex appeal to the larger public. Most importantly the 3E Love symbol gives others who might feel isolated and alone the means to see disability in a positive light. For many, this will be an eye opening experience.
The message of 3E Love was one of true importance to its' creator, Annie Hopkins, and is also close to my heart as well. Diversity keeps the world interesting. My diversity has shaped me into the strong Filipina woman with a disability that I am today.
Upon getting accepted into the University of Illinois at Chicago's Ph.D. in Disability Studies Program, I was denied the right to utilize my personal care attendant services that I receive in Louisiana to attend school in Chicago. I am proud to say that due to the help and support of my disability community, I am currently a full-time Ph.D, student in Disability. Though my own struggles, I want to educate people on the power of our community.
We only live life once. So, live everyday to the fullest with all of its ups and downs. Love, strength, community, and sex appeal is what the 3E Love symbol means to me!
I got paralyzed waist down when I was 16. Humor is one of my strongest qualities, and one of the most important weapons to me in this fight against a serious illness. And by wearing my "That's how I roll" hoodie I got the opportunity to show everyone that I embraced my new life and that I do it with style and laughter - typical me!
It is important to spread a positive image of disability, because others must not forget that we are still people. I'm still me; the funny, silly, creative, laughing, smiling, positive girl that can cry and be honest about that this is one hell of a fight and that I suffer - the girl who loves to sing and used to be an actress, who loves musicals, the theater, stars, wind and soap bubbles. I'm still me, and I myself need that reminder when the storm hits too hard. With the symbol I learn to love myself and who I am. I am proud of everything I've managed to do despite everything. And I want the world to know, and I want to educate them on my world.
My disability has progressed to the worse, and status epilepticus made things serious in May 2013 and I ended in the ICU in a medical coma. I lost more function and my disability is now neck down. I can't sit, nor can I hold my own head. This is an even tougher process and I have to accept this new life all over again. I am trying my best to wrap my head around it all, and I cling to the symbol for hope, love and pride. I have lost so much, and it sometimes feels like I've lost myself. But I haven't. My body may have changed, and I have yet another perspective on life and even more wisdom, but I am still here. And the symbol is my friend and support on this journey. I love myself, I am proud for overcoming this, for having survived, and I have hope. My family is proud of me and wears the symbol with me. And seeing them in a proud shirt makes me so happy and it makes me tear up. Because I have the most amazing supporters by my side who helps fulfill the 3 E's: embrace, educate, empower.
And that is why I love 3E Love.
Then I started following 3E Love, along with other positive disability organizations. I started reading about other amazing people who live life to the fullest in a wheelchair. I started to transform my own fears and my own awareness. I began to spread a message that had taken me a long time to learn. I found out that once I embraced the wheelchair, suddenly the people around us changed. The stares are still there, but now I choose those moments to educate when I can. Those people that used to ignore him now speak to him .
I get it now. I get Embrace. something that my son, in all his wonderful innocence, always understood. There is nothing wrong with being in a wheelchair. It won't hold him back from achieving his dreams. Well, maybe he'll never be a Teenage Mutant Ninja Turtle, but I'll never be Princess Leia like I wanted to be when I was his age.
I am amazed every single day by the way he touches everyone around him. He has this amazing charming and witty personality. He touches everyone who takes the time to get to know him. His teachers and aides cried when he moved on to the next school because they loved him so very much. He is the child that smiles and laughs, with laughter that is contagious. He is a child that tries to charm his way out of therapy, and is quite successful a good percentage of the time. He is a child that all of his classmates volunteer to be his helper of the day. He is a child that is full of light and full of life. He is like his grandpa and daddy. His wheelchair is part of him, but it does not define him.
For him to have the opportunities to achieve his dreams, Educate and Empower are key. Businesses need to be educated on how they can make small changes to make their locations accessible to wheelchair users. They need to be educated on not being afraid of hiring people in wheelchairs. There are so many different areas that need education on this, I could write a book naming them all. With education comes empowering. Giving those with disabilities the tools and the courage to live their dreams and make the changes in the world that will allow them to do this.
3E Love's message is one that took me a while to understand fully. Now that I do, I see how very important it is to spread and make positive changes in the world so that we may all share it equally.
My name is Jan this is a short intro to my story. I have Osteogenesis Imperfecta, type 3. (brittle bone disease) I have broken my legs a few times, as well as arms, fingers, toes and I fractured my spine in 1984. 9 months later (1985) I found out that I had a kink in my spinal cord and more than one fracture in my back. which is when I had to start using the chair in public places or places where I had even the slightest chance I might fall. November 15, 2001 I was in a car accident and after 4 days in the hospital I was sent home with whiplash. Three weeks later I had an MRI of my entire spine. and found I had a c2 dontoid fracture and several other fractures (t4 ~ t11) I had surgery to fuse my neck wore a halo and collar for 3 1/2 months. I was told by several people that I was lucky to be alive, let alone not a quadriplegic. I have nerve damage down my right side. along with the existing spinal cord injury leaves me wheelchair bound all the time these days. It does not define who I am as a person.
One of the ways I approach diversity is that I speak with people about my chair why I am in it. I feel like the wheelchair heart and 3E LOVE is extremely helpful and inviting for people to ask questions. Also helping people be aware that diversity is not just race, religion, or color of a persons skin. It also covers whats in the heart, in this case the wheelchair heart.
One of my biggest pet peeves is when people stare at me like I am evil or diseased and untouchable. I am not contagious. I do not bite! When a child is watching me or sometimes ask me questions. It really makes me angry when a parent pulls them away telling me they're sorry. The truth is they did nothing wrong. If a child is interested I am not afraid to talk to them. When I was first told I had to use a wheelchair in high school. I remember one of the teachers asking me to introduced myself. with the reasons I was in the chair. It made a difference in how some of the kids treated me. no it didn't change the number of my friends, but it did keep one guy and his brother from teasing me. I just did no understand why people are so mean. I think if this logo was more widely known with what it means, some teenagers may not be so mean to the other students. some adults may not be so afraid to allow their kids to learn something new from the community around them. People with a fear of the chair can see the logo and start the conversation. I tend to ask people something giving them away to ask me whats going on why, I am in the chair. I feel like idea of bringing forth an image of love and hope for people who live their life's in a wheelchairs is a great idea. Introducing more young people to disability awareness, may lead to a happier future of hope with or without disabilities.
Thank you for bringing this movement to all of us!!
Over the past few years, I have seen children go from walking to walkers, from manual chairs to power chairs. What is the one thing that I have not seen change? Through all of the changes that I have seen my campers go through, I have never seen their disability limit them. I have seen positive attitudes, outstanding courage, and overwhelming hope about the future that lies ahead. I believe the biggest misconception that people have about disabilities is the belief that they completely ruin someone’s life. That is why 3E Love is so important to me. I use it as a conversation starter. It is an aid to tell my story and my campers’ stories. I tell the story of a girl loves to sing and dance. I tell the story of a girl who calls her chair her Nissan. I tell the story of the girl with the kindest spirit I have encountered. I tell the story of a girl who has never walked, but has made it to the top of a rock wall. I tell the story of the girl who built up the courage to go down the waterslide, despite her fear. I tell the story of the girl I saw ride a horse for the first time even though she had always been told that she could not. I could go on and on forever. Most of all I tell the story of the six sassiest divas that I have ever met and how the one week I spend with them every summer is the best week of my year.
The symbol speaks to people who, before, may have been too afraid to ask. It speaks out against the whispers and boldly faces the pitying looks that many people with disabilities face on a daily basis. I wear the symbol for my girls, so that with every conversation I have, the world becomes one step closer to an accepting society. I want to do my part to help change the way that society views disabilities and the individuals who have them. People are people, no matter what disability they may have.
I am 23 from Montgoemry PA, I am physically disabled living with Spina Bifida (Myelomeningocele) and Hydrocephalus I also am wheelchair bound for life. Ever since my young parents found out they were having a child with special needs, life hasn’t been easy. Growing up with special needs is definitely a struggle not only for my parents and myself but also the people around me. No one prepared my parents for handling a special needs child but they didn’t care they took on the challenge of doing it and although it hasn’t been 100% peaches and cream. Constant hospital visits and illnesses pertaining to Spina Bifida wears really hard on a family especially when there is another child caught up in the messs my older sister kayla was kinda pushed aside and feeling left out.
Growing up I was slowly learning about myself and why I was different then most kids my age although I didn’t fully understand my disability and all, and well it was heart wrenching to hear that I was different and possibly never being able to walk at all. School was also a big huge issue fitting in was a huge deal to me always wondering “will I ever fit in?” “will any one wanna be my friend?” Being handicap is definitely not the life I imagined for my self but there is nothing I can do to change it or make it go away no matter how many times I have tried to. Constant stares and whispers are always going on when I am out in public and it really upsets me but I just hold my head high and don’t let it be known it bothers me. Like every other girl my age I dream of dancing at prom and walking down the aisle when I get married and I danced at prom(in my chair course) and when I get married I will be going down the aisle but I just will be pushed down the aisle and yes it pains me but all that truly matters is that Im alive and I have a huge ton of support.
Finding the 3e Love wheelchair heart was noticed by my sister through facebook she mentioned it to me so I googled it to find out more about it and instantly I fell in love with it and ever since finding 3e love it has been so amazing to know that theyre are great inspiring people to let handicap kids and adults know that there is no shame in being unique and disabled mentally or physically. Me and my family are big supporters of the wheelchair heart. To me it symbolizes strength and courage and over all acceptance of the human race who are disabled, giving them a voice and letting them know that being disabled is something we can embrace and take on the world with our heads held high because we can do anything we set our minds to disabled or not. NOTHING IS IMPOSSIBLE!
I was only 11 when she was born, so I didn't really know what it meant and all I thought was "wheelchair?".
I was forced to grow up and take on responsibilities that no normal person my age had to.
But I was so happy, I had a new baby sister and she was gorgeous! As she’s getting older she’s surprising us every day. She’s even taught us a new language (eye gaze).
Before my sister was born I didn’t know much about disabilities, all I thought it was is some people can’t feel their legs so they have to use a wheelchair. But no it’s much more complex than that, it’s opened my mind to all the different varieties of different disabilities.
Whenever we have an outing, without a doubt we will at least get one person staring, sometimes it looks like people are staring at her in disgust, or looking at her like she’s an invalid. It enrages me so much but I think of how my sister would feel. It’s very sad really.
It’s a very tiring job looking after a person whom suffers from a disability. It drains you, but the thing that keeps me going is knowing that she desperately wishes she could do all of this herself. She tries so hard. Every now and then I’ll have a breakdown and cry about everything that’s going on. It’s like I’m still not over the fact that this has happened to her.
I believe that she was given to us for a reason. God knew we were capable of caring for someone that needs so much extra attention. He knew it would also strengthen us & bind us together more as a family. She’s the core of our family; without her the house feels cold & un-homely, her smile can brighten up the darkest day, she’s the most loving little girl, I don’t know what I’d do without her.
The wheelchair hear symbol to me means that all people with disabilities are people too , they all have feelings and a heart , they think like we do & they need as much loving and caring as any person does. I don’t believe in “Acceptance day” I believe they should be accepted every day. They’re human beings, were human being? No one should be able to judge. Although I think our family spoil my sister because we love her too much. But why shouldn’t we spoil her? Of course there’s boundaries & discipline. But I want to make her happy, and try to give her the best life possible. I have a 3E tattoo, but it’s not in the shape of a love heart it’s like the normal disability sign but with her name written as the chair. And I love it.
…..
Certainly the wheelchair heart conveys disparate meanings to different people. For some the message is straight-forward – persons with a disability can love and be loved. For others, the wheelchair heart takes meaning from the 3e’s of 3e Love – embrace, educate, and empower. For me, the symbol has another meaning...
The first time I saw the wheelchair heart was on Annie's back shoulder. She was getting ready to go out with her friend Susan. Her music played loud and filled you with energy. I was driving to get to my room down the hall. Her door was open and laughter poured out as usual. I couldn't help but look into her room. She was putting on her makeup while dancing in her wheelchair. It had a dizzying effect. I chuckled. Boys didn’t stand a chance. Ha, neither did I.
"Want to see my tattoo, JKo?" She asked with flirty undertones. She liked to tease, and I made an easy target. No doubt, I turned red.
"Yeah. Yes, I do." I mumbled. She angled her wheelchair and leaned over so I could see her new tattoo.
I thought it was genius. Two bold lines drawn in indelible ink – one curved in the shape of a heart and the other in the shape of a seated figure – farcically mocking the handicapped figure that watches over parking spots. The tattoo looked like it could be racing away across her back. She turned around and smiled.
“What do you think? Do you like it?” she asked, already knowing the answer.
Caught in her spell, I could only nod. Annie laughed.
“Wheelchairs are sexy, right?” I suggested after regaining my senses, and Annie laughed again.
Her laugh could draw you in like a siren’s song. I wondered if Newton’s inverse square law of gravitation applied to forces like Annie, and I backed away before falling completely head over heels. As I wheeled away, I contemplated the heart symbol and the figure riding on it. It looked innocent enough – a play on the traditional "handicapped” symbol -- but the figure seemed to wink at me and say:
“Beware, I mean to steal your heart and roll away with it…”
It would be years later before I would see the wheelchair heart symbol again. I should have remembered my first impressions. But, I never saw it coming. The signs were posted all around – it was a 3e love event – wheelchair heart symbols everywhere. A girl stole my heart and ran away with it.
Epilogue: I guess it’s funny the wheelchair heart does make me think about love and disability. They say that when one loses one of their senses that the other senses will sharpen to compensate for the deficit. I wonder if, in the case that one loses the ability to move, whether the heart and the mind make up for what is lost… and, I wonder what the girl, who has my heart, will do with it.
I have volunteered whenever I can, gone back to school to get degrees so people will listen to me, and always taken an opportunity to shout. I have met many people and will meet many more, my battle has just begun and my war is unending but I intend for future generations to win. The wheelchair heart is a symbol, but it is more to me. It is my shield as it gives me strength to continue, to know there are others; I am not alone. It is also my weapon of choice. It is a powerful weapon, a symbol that can shout empowerment and teach people to love or notice people in wheelchairs everywhere. I feel honored to wear it and use it, it is my badge of courage. It is a source of peace.
The future is bright as more people join this battle, this movement and successes happen. I know my children have started advocating already even at young ages of 9, 12 and 16. They have helped create, fund and work on projects giving a voice to people who have various disabilities. They are amazing and I am proud. I feel as though I am a general who has been slowly winning the war. It is a good feeling. I one I feel every time I see the heart wheelchair symbol. The Day of Acceptance is just one example. It is an opportunity to let the world know that people with disabilities are just people. They are people like everyone else who experience joy and sadness. We all need to stand together and acknowledge people with disabilities can and will contribute to society so they should be valued as all other members, and cherished in the same ways. We have a long way to go, but we have achieved a great deal and I am truly honored to be chosen as one of the soldiers embracing differences, and educating the world.
I know that they mean well, and I appreciate the sentiment, but all I hear is pity; that they think I’ve missed out on something. That my life has been marred in some very important way by my dad’s illness. Certainly there are difficult patches, but sympathetic responses change the terms of the conversation; it’s no longer a story about my dad I’m telling, but about my *disabled* dad. This shift in tone is often so uncomfortable for people that I end up diverting the conversation, always keeping in mind that a lot of my life stories—many of the moments during which I have felt closest to my dad—will create too much awkwardness for the other person. This interaction is not this other person’s fault, nor is it caused by my insecurities or shame, but sometimes I don’t have the time or energy or words to get into *it*. Yes, I’m sure there are many advantages to having fully able-bodied parents, but there are also things you miss out on if you don’t have a disabled parent.
I usually respond with “Don’t be sorry! He’s not. We’re not!”
But what I want to tell them is a story about me cleaning dried blood off my dad’s toes—from bumping into walls without shoes. Sometimes I’ll put too much alcohol on the wound and even after a lifetime of experience I’ll say, ‘Oh no! Did that hurt!?’ To which, he’ll give me a little chuckle, and with that silly glint in his eye that tells me that he doesn’t have a migraine, he says, ‘no I didn’t feel it at all.’
I want to tell them how easily my dad can smuggle taco bell into the movie theater: nobody’s checking his wheelchair for chalupas. We’ve both benefitted from this during epics like The Hobbit.
I want to tell them that my dad got a new sling for his Hoyer lift that makes him look like a ninja turtle when he’s suspended, and also that when I wrestle it out from under him once I get him in bed I’m surprised if a peanut M&M doesn’t pop out.
I want to tell them how much I used to look forward to helping my dad organize his pills once a week into their compartments. And how I would be unhappy if there were only white pills in a compartment, I liked the orange, green, yellow, blue, purple, and red pills to add pops of color.
But those stories, daily life for us, would be classified under the heading of “dark humor.” So I stay away.
I wish I could explain to them that the moments I’ve felt closest to my dad are when I’m cutting his toenails, cleaning and dressing his wounds, putting lotion on his feet and legs, dressing him, pushing him in his broken power wheelchair through the icy snow, transferring him into bed, catching him as he slips, feeding him. These are the moments of closeness that don’t exist in able-bodied relationships.
I wish I could explain that in these moments our bodies are caring for one another; a kind of intimacy not usually afforded to a father and daughter. It’s not just that I am some selfless daughter who’s always by his side (because I’m not). It’s the love I feel because I have earned the right to take care of him.
I know the intricacies of his body; I can tell how bad his headache is by how low his eyelids are; I know in what position he sleeps, where the pillows go, and how many blankets he needs; I know what color, temperature, and texture the skin on his feet and legs should be; I know the frustration on his face when he can’t hold his hand steady enough to feed himself; I know that the next time I see him these abilities may have changed; I know the tone of voice he uses when he hasn’t had a headache all day; and I know that when I ask him, ‘dad are you okay?’ he’ll probably answer, ‘No, I have MS.’
I’ve learned to be conscious of his body in space in relation to my own; where to put my arms under his shoulders to help him sit up straight; how to slip my hands between his back and wheelchair fast enough to pull down his shirt when he pulls himself over, how to move his legs gently enough when his arthritis flares up; how to dance with him; and all the different ways to hug him.
When I take care of my dad I don’t just feel love *for* him, I also feel love *from* him. In loving me, in trusting me to take care of his body, he’s trusting my body to take care of his. He’s in a vulnerable position swinging in his lift, but I know that he respects and trusts me enough to get him into bed safely. I know that not just anyone gets to do this.
A symbol is something that stands in place of something much larger. For me, the 3E symbol represents all these things that I wish I could say to the person who is ‘sorry about my dad.’ I don’t resent them, I just wish there were words to explain why I have MS to thank for the strength of our mutual love and respect. That in my family, a wheelchair does represent love. That’s just how we roll!
Finally, it is a symbol of Pride. And as a person with disabilities and an advocate for others, I will be proud to wear the heart on my chest and using my lapel pin when I cannot wear a T-shirt.
I am proud to say that We matter no matter what our abilities!
Years later my first born child was born with Congenital CMV. Having this also deemed her with Cerebral Palsy. This has left her in a wheelchair and being dependent on me for everything. We have gone through all the norms of childhood with added events.
At 6 months of age she had her first seizure, which we went back and forth for years between different medications and options to help calm or stop the seizures. We finally found the ketogenic diet, A high fat, high carbs, no sugar diet. With in the first week her seizures calmed to almost nothing. This was the best breakthrough we went through.
Slowly as years went on, 2 years on the diet we were able to go back to normal foods and formulas. Since then the doctors have found a good combination of medications to keep the seizures under control.
Since then she has had 3 major surgeries on both her hips and her back. Her hips dislocated cause of her muscles being so strong they over powered her joints. The last surgery was on her back. She was physically 120 degrees out before the surgery. Now she has 2 rods on both sides of her spine which has brought her almost back in alignment.
When she was born the doctors told me that she would die by the age of 1, but time and time again over the past 19 years she has proven them all wrong. She is always happy and when she giggles I know she is hearing her own tune and she knows the love she receives everyday.
My most recent tattoo is that of the 3E wheelchair heart within the word Love, to complete the statement a mother's love. This was done for her and for what she has taught me about life and most of all unconditional love.
She has 2 younger brothers who don't see her any different then they are. They embrace her , educate themselves with my help, educate others about her, and love life in general. They love to help me take care of her, read to her, talk to her, and sing to her.
She has become my voice to educate others about her CMV and explain everything we go through. I don't know what I would do without her in my life. She is my angel in the dark when I don't think I can handle what life throws at me.
I have met some great people through our journey, teachers, doctors, other children. It is just great to know and have known these people in my lifetime. I don't think I could ask for anything more.
I look at it to helo Rise above limitations and help me move forward and think positive.. After 10 yrs i sitll hope and pray i walk again.
I empower others by telling my story of how i got into a wheelchair. I dont let people put me down..
The wheelchair heart symbol is to assist in educating people in the community that people with disabilities are just the same as everyone else and just they see wheelchair first. Most of the time people don’t see the person who is in wheelchair and they are frightened to interact with the person in the wheelchair because they don’t know how to act or talk. The aim for this symbol is to let everyone know to give individuals with disabilities a go in life to achieve and be inspirational to others.
I love the wheelchair heart symbol because it sends a message out that love people with disabilities for whom they are. I think that the person who designed the wheelchair heart symbol has done a great job to make it eye catching and draw people’s attention.
Society is so quick to judge. It is important to have a positive imagine to be able to break down the barracks and walls about people with disabilities. I believe that this wheelchair heart will create positive conversations about people with disabilities between people.
I have Cerebral Palsy and I am a computer artist in Tasmania, Australia. I have a high school friend who was diagnosed with breast cancer in 2012. I started cheering her up with posting my artwork on her Facebook wall throughout her breast cancer journey. I decided to create artwork about breast cancer to educate my friends about breast cancer on Facebook. Last year I took up the challenge of doing a fund raiser for the National Breast Cancer Foundation with my breast cancer artwork printed on calendars and cards for sale.
if it is not acccepted I plan to share it of FACE BOOK! reguardless!
MY JOURNEY AS A BLUE BIRD!
Sitting Alone she is dreaming of home. unlike the others she long to fit in, in search of a world that will let her begin. But will she find comfort? she is determined to WIN!
Her wings have been tested ...she is eager to fly,
as he sits on her perch the world passes by.
Her song is of hope, one that many have heard...but,none have ever known of her journey,
as a BLUEBIRD!
empower others by sharing to love life...No matter what!!... as 3E reminds us.
Also, wearing my 3E hoodie makes ME more confident. It makes such a bold and beautiful statement for me. Yes, I am disabled. No, I'm not trying to hide or ignore it. I embrace it and love myself in this body. I love my life and everyone in it because I have an amazing quality of life in spite of AND because of cerebral palsy. It's as much a beautiful part of me as my tattoos and piercings. I wear cp proudly now just like I wear 3E proudly. I embrace what's different about myself and I embrace what's different about others. If I don't win this contest, I'll be content because with the help of 3E, I have already won so much. My real reward is in getting to say thank you. Thank you for everything you guys do. Not one minute of it is in vain.