Friday, January 29, 2016

Special Needs Spotlight || Rebekah

thoughts on accessibility || This Little Miggy Stayed Home

Hello, lovely people! My name is Rebekah. I am a writer and teacher who lives in a very small, very old house with two chunky orange cats in Kansas City. I’ve been paralyzed for as long as I can remember but did not begin to really unpack what this unique embodiment meant to me until I was in my mid-twenties and began working with disability studies in my PhD program. As I studied for the first time things like the social construction of disability, I began to process a lifetime of memories and feelings connected to my body. While I spend a lot of time writing long-form pieces about my connection to disability, I recently started an Instagram account, @sitting_pretty; I use this account as a medium to 1) reflect on what it means to live as a disabled woman, 2) connect with others who are also processing what it means to live from a particular body, and 3) share more beautiful, nuanced photos of a body that looks and moves differently than most.

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Miggy: Hi Rebekah! I'm SO glad to be featuring you today on my special needs spotlight series. I know you from your lovely instagram account @sitting_pretty and I can't remember if you found me or if I found you but I'm so glad we found each other! In addition to being beautiful, smart, poised (and a little sassy) you are also a paraplegic and a wheelchair user. A lot of your IG posts about accessibility have really struck a chord with me. But lets start at the beginning...you were born a typical and healthy child, but were diagnosed with cancer when you were 14 months old. The tumor wrapped around your spinal cord and by age three you were paralyzed. You also spent a significant amount of time in your early years in and out of the hospital treating your cancer. What do you remember about those early years? Do you remember what it was like to walk? Overall how would you categorize your childhood (or do you)? Looking back now, do you have a different view of how those early years have shaped you?
Rebekah: I actually don’t remember very much from those early years going through the chemo, radiation, and operations. In some ways, those years feel more like my parents’ story than mine. They have very sharp memories of what it was like to watch their youngest baby fight deadly cancer for years, and I have to struggle to imagine how I might have experienced the stories I’ve only heard about myself. I’ve watched the fuzzy, 1980s home-movies taken of me in the hospital with my bald head and baggy, yellow hospital gowns so many times, I wonder what I remember and what my imagination has fabricated into a makeshift memory. I do have a few very vivid clips and snippets from that time that I hold onto tightly: my dad singing songs to me while he pushes me across the street toward the hospital in my ratty blue stroller; using a permanent blue marker to draw scars to match mine on my baby doll while my mom napped; a doctor sticking my paralyzed legs with pins, shouting “Do you feel this?” I don’t remember the months upon months of nausea and vomiting from the chemo, I don’t really recall the needles or the surgeries, I don’t have a single memory of walking, and I can’t imagine what having full sensation in all of my body might feel like. In some ways this feels like a giant gift, and in other ways, it makes me feel largely disconnected from myself. Those years were incomprehensibly formative for who I am now, and I can’t recall them. (But maybe that’s the same for all of us in one way or another.)
It’s difficult for me to trace how these years shaped me. From my earliest moments, I was (understandably) encouraged to be brave and strong and happy in the midst of my pain, and I absorbed this so thoroughly into my body and mind that it took me until my early twenties to understand its larger implications. On the one hand, I think it made me pretty fierce. I am capable of barreling through almost any challenge I decide to tackle, and I like that about myself. On the other hand, I did not develop the skills to recognize my emotions. It’s like those early years of smiling in the midst of pain slowly burned off all the sensors in my body that could tell me when I was unhappy or uncomfortable or discontent or frustrated or sad, and without these sensors to guide me through life, I was pretty lost. In my early twenties I had a pretty significant break-down that motivated me to go to a wonderful therapist who has worked with me the last five or so years on learning to process my emotions, trust my own perspective, and use my feelings as a guide to take care of myself. So, the early trauma had a powerful effect; parts of me were bolstered into steely strength while other parts of me atrophied. This give-and-take seems rather inevitable for something as potent and destructive as childhood cancer.

Miggy: You are the youngest of 6 kids. Can you tell me what your family life was like growing up? I'm sure cancer, chemo, paralysis, and wheelchairs threw your family for a loop! How did your parents handle these unexpected changes? Did you have great support from your family and siblings? Was there anything you wish they would have done differently?
Rebekah: I have two sisters and three brothers, and growing up they were the safest and happiest place in my world. I’ve heard that during my treatments my siblings were often the only thing that could make me smile; they still seem to have a superpower ability to make me laugh more than anyone else. I know in my head that my paralysis must have brought significant changes to the family system, but that’s not how my memory recorded it. From my tiny perspective, my paralysis became a regular fact of life very quickly, about as consequential as my brother’s retainer or my sister’s pierced ears. More than paralysis, I remember Swedish pancakes in bed for our birthdays, delivering May baskets on May Day, marshmallows arranged in a smiley-face in my chocolate Malt-O-meal, secretly listening to Weird Al tapes while my parents were on a date, memorizing all the lyrics to Sound of Music and belting them at the top of our lungs, having underwater tea parties with my sister at the pool, making “magic potions” with all the soaps and powders in the bathroom, falling asleep to my Dad singing us hymns. There were no accommodations made to our house, and I did not start using a wheelchair until I started first grade (about four years after I lost the ability to walk). I slept on the top floor on the top bunk in a bedroom with three of my siblings, pushed a little red tricycle around the neighborhood, and used my walker to make up dances (that I liked to perform for my dad when he got home from work). I found creative ways to use my body to do the things and go the places I wanted. During those first years of paralysis, I lived in this content bubble with my family; they saw me like I saw me – capable and beautiful. In essence, they hardly acknowledged that anything had changed at all, and this was both wonderful and damaging.
While my family saw me as the same little person they had always loved, the world saw me differently, and eventually, I started to realize this. People, especially other kids, stared at me –long stares that followed me down the hall. Kids at school were obsessed with pushing me and my wheelchair around the playground, which made me feel both special and not. I began to notice that I moved differently than other people, and I started to clamber less and stay seated in my wheelchair more. This only got worse as I moved into middle-school – the most horrible age for all the human people of the Earth, wheelchairs included or not. I cringed through one dance with one boy at one party and felt so uncomfortable I wouldn’t be able to dance happily and easily in public until I was twenty-five. By the time I hit my teenage years, I felt unattractive, undesirable, and overall unworthy. But, as I mentioned before, I had no skills for understanding the grief I was experiencing, where it came from, or which feelings were valid and which weren’t. I continued to play my chipper part, but my internal world was crumbling. So, not acknowledging my difference at home made me feel accepted but left me unequipped for processing the fact that there were ways in which I was, in fact, quite different. I felt both infinitely loved and hopelessly alone, supported and abandoned. While I don’t blame a single person for this – I have no confidence that I could have handled it any differently had I been in their positions – I do wish I had had an advocate to walk through some of that with me at the time.  

thoughts on accessibility || This Little Miggy Stayed Home

Miggy: As I said above one of the things that I really resonate with in your IG posts have been the difficulties surrounding accessibility as a wheelchair user. Having a daughter with a power chair we have quickly learned that the world is not accessible! As a disabled adult, living on your own (getting your PhD no less) what is your day-to-day like? Is accessibility a struggle in your daily life? In short, what do you want able-bodied people like myself to understand about the importance of accessibility?
Rebekah: I’m glad my posts on accessibility resonate with you, because I actually struggle quite a bit to articulate my thoughts on this. On the one hand, I want people to understand that I am a capable, strong, independent person who can load my wheelchair in and out of my car and bump down a curb and help carry the Christmas tree home, no problem. On the other hand, I want it to be recognized that the world is not made to accommodate a lot of bodies (mine included). This lack of accommodation is a drag; it often drains me and requires I rely on another person to help me do what I want to do. So I don’t need help, and I also need help; I am independent, and also sometimes dependent; I have found a way to access, and the world is largely inaccessible. All of these things are true at the same time, and it can be a challenge to represent all of it clearly.
I suppose if there’s something I want all of us to consider when it comes to accessibility, it might be to consider the scope of that word--“accessibility.” While I’m always and forever in favor of programs that promote more accessible places for more people, I find that comprehensive accessibility is actually a whole lot more complicated than finding the right tools or making the appropriate modifications. When I think about genuinely “accessible” spaces--the kind of space where I feel safe, included, connected--where I can take a deep breath and know my needs will be met--part of what I see is ramps and handicapped spaces, but mostly I imagine more and more people who are open, present, and flexible about what it looks like to be human in this world. I wish for us to hold back on our assumptions about what it’s like to live in another body--to stop pretending we know how difficult or how easy something might be for another--to recognize the vast discrepancy between our experiences of the same places. I don’t want to be praised for learning to adapt, or pitied for challenges I encounter. Some tasks may look difficult for me that are actually quite simple, while other times I might make something look pretty easy when it actually costs me quite a bit. I think most of us are in the habit of make sweeping assumptions about what it’s like to live in another body, when, in fact, we all experience the world differently from each other in one way or another for this reason or that. So. Let’s hold back on our assumptions, let’s be kind to each other, let’s try to understand what the world feels like from another body, and let’s try to make things as comfortable for each other as we can.
          
            
Miggy: I've written a few posts about the problem with pity (here and here) when it comes to having a disabled daughter and how her biggest obstacles aren't her physical limitations, but the limitations that come from society and from people who think of her as "a poor thing" or who "feel bad for her." I'm curious if you agree that accessibility and physical limitations are smaller problems than pity and the way the public sometimes views the disabled community.
Rebekah: Absolutely, yes, I do agree. One of the most draining parts of living from my particular body, I find, has to be my constant push against the cultural narratives being told about disability and bodily difference. The strangers who approach me at the store or in a parking lot to tell me how brave I am (for essentially just making it to the grocery store?), or the acquaintances who tell my partner how amazing he is for being with a woman in a wheelchair. Sometimes I feel like I’m trying to hurl a giant stone wall off my back just to be seen as a whole, three-dimensional person in the world. Our culture represents disability in such confining roles; we are allowed to be the victims who inspire compassion or “charity” (gag me), or the heroes who motivate the non-disabled to live life to the fullest (because, if a person is able to accomplish anything with an impairment, think what a person could do with the use of all their parts!) (double-gag me). Both of these roles are designed to serve the observing non-disabled person, and really has very little to do with the actual human being living life. In fact, I think these victim/hero narratives are part of why our world remains so inaccessible. The “super-crips” (people with disability who triumph over their adversity through individual determination) contribute to the belief that people with disabilities really can do everything a non-disabled person can do, if they just try hard enough. And the pitiable ones are portrayed as hopelessly dependent on the benevolence of others. Either way, why invest too much in making the world more accessible for these bodies?
So, yes, I do agree that the cultural scripts written for those with disabled bodies are perhaps the most punishing aspect of living with a disability, and I see these perspectives as intricately linked to the state of the tangible world we live in (architecture, media representation, employment rates, etc.). One of my biggest hopes and goals is to contribute to increasing and bringing more nuance to the cultural representation of disability. We need to move beyond that victim/hero paradigm! And, in the words of Eli Clare, “we need images--honest, solid, shimmering, powerful, joyous images--of crip bodies…” That is one of the things I love so much about the photos that you post to your Instagram/blog--you contribute beautiful images of your family that show the beauty/humor/normalcy/idiosyncrasies of living life with a different sort of body. I LOVE that, and I feel greedy for it; I wish for so much more of it in the world.

thoughts on accessibility || This Little Miggy Stayed Home
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?   
Rebekah: Ha! Yes, life definitely presents plenty of moments when I’m in the middle of something that makes all the strangers look at me like I’m crazy. My friend and I running away from angry geese when I hit a curb and fly out of my chair, laughing so hard I can’t get back up (what does that even look like from across the street? Not sure…) Or riding piggy-back on my friend’s back into the 7/11 because we didn’t have room for the wheelchair in the car – the manager was so furious for our “rabblerousing” until he realized I was paralyzed and immediately groveled like the worst sinner. Or the AT&T repairman who came to my house to fix my internet, then sheepishly asked me what word I used to refer to the chair I used to get around. He’d been told to refer to it as a “freedom machine,” but felt too awkward to actually throw the word into our casual conversation. There’s plenty of absurd to go around over here! :)

Miggy: Living with a visible disability has unique challenges, in an ideal world how would you like people to approach and/or respond to you? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  
Rebekah: I’m approached by well-meaning strangers nearly every time I go into public. People wanting to help put my chair in my car, carry my groceries, hold a door open for me, retrieve paper towels for me in the bathroom. People wanting me to explain my body to them, how long it’s been disabled and why. People wanting to pray over my body for its healing. (This actually happens more than you might think, and, if we’re keeping track, this is my least favorite thing in the world.) My brain recognizes that people wanting to reach out into a world of strangers and help me is some sort of beauty; who complains about strangers wanting to carry her groceries for her? Me, apparently (puts face in hands).
I’ve spent a whole lot of time trying to pinpoint what it is that I don’t like about these wannabe acts of kindness. The funny thing is, I really don’t mind accepting help from the people closest to me. My boyfriend will tell you that I do not hesitate to ask him to take out my trash and shovel the snow off of my ramp. My sisters can testify that I don’t resist when they offer to push me along the sidewalk in the cold winter or carry my mug of coffee across the carpeted living room for me. But I think this is because they already know me; their extension of kindness is wrapped up in care for a human that they know to be capable.  
Of the hundreds and thousands of interactions I’ve had with strangers out in the world, I can only remember one that left me feeling good about myself. A man walked up to me as I loaded groceries in my car and said, “I was going to offer to help you, but you really look like you’ve got it figured out.” He didn’t make a big deal out of it – just said his thing, smiled, and moved on. Years ago, this man made this comment to me, and still it stands out so starkly against almost all of the others. He looked at me with open eyes, reading me as an individual person and not a stereotype.
After thousands of interactions with strangers out in the world, I’ve realized that my body is very quickly read as a sort of handicapped girl caricature. I suppose, if I could choose how people saw me, it would be entirely detached from any preconceived notions of disability or wheelchairs. I wish for people to wait just one beat past their automatic gut-reaction, to listen, to reconsider old ways of thinking about bodies or strength or beauty before doing anything else.
thoughts on accessibility || This Little Miggy Stayed Home

Miggy: As a paraplegic and wheelchair user you probably have a unique point of view on life and see things from an angle many others don't see… Is there anything else you want people to know about you, your life or disability in general? If you could give any advice to a mother whose child has just become a paraplegic what would that advice be?
Rebekah: For a lot of my life, I felt mortified by my body. It was the worst part of me; I wanted to hide it, ignore it, pretend it wasn’t what it was. As I grow, I’m beginning to recognize the truth and power in the very simple idea that “all bodies are beautiful.” Because they are alive, because they have shapes and textures and colors, because their pores have absorbed one minute of this crazy planet, because they have thoughts and feelings and weird little preferences, they are drop-to-the-floor-stunning miracles of gorgeous life. If I could talk to a mother whose daughter was newly paralyzed, I would tell her to learn this organic, spirit dance of acceptance and delight in difference, so that she can teach it to her daughter. This does not mean she needs to ignore the fact that a lot of the world still believes very few bodies are beautiful enough. She will be reminded of this fact over and over and over again, which will probably hurt, and that’s okay. It’s OKAY for her to feel frustrated, tired, misunderstood, cranky, and not up to the challenge of the day, cause even then, even in those moments when she feels the most flattened, she is still a wonder to behold. I think the more we understand this, the freer we are to love and create and enjoy and connect and be.

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THIS. I LOVE THIS SPOTLIGHT. Please, dear readers, share this far and wide. It's so hard for me to narrow down everything that spoke to me as a mother of a daughter with a visible disability and a wheelchair user, but first let's talk about Rebekah's definition of accessibility. BOOM. (Where is a 'mind blown' emoji when you need one?) Yes we need more ramps and parking but mostly we need "more and more people who are open, present, and flexible about what it looks like to be human in this world." And we need to push beyond the victim/hero scripts of disability. YES and YES. As a mother I worry a lot that Lamp will be held to a higher standard as someone who must "overcome" her disability and have a good attitude while doing so. She does't need to be a motivational speaker, a Paralympic athlete, extra smart or anything else (although those are great things). I hope for her that she is just allowed to BE. I once said that disability rights are the final frontier of civil rights (and I took some flack for it too) but the idea isn't that we've solved the issues surrounding race, gender equality, or sexual identity but as a society the conversations surrounding disability issues haven't. even. started. At least not in a meaningful way. When Rebekah says, "I do agree that the cultural scripts written for those with disabled bodies are perhaps the most punishing aspect of living with a disability, and I see these perspectives as intricately linked to the state of the tangible world we live in (architecture, media representation, employment rates, etc.)" Do you know that the disabled community is the largest minority in the world,--a minority the size of China--but the least represented in the media? This is a problem. THIS is why I do what I do, why I share these stories week after week. (And why I love ChangingTheFaceofBeauty.org). Having a stronger representation of disability in the media directly correlates to moving beyond the victim/hero stereotype, it helps to "normalize" for a lack of a better word disabilities and will actually translate to employment and equal opportunity for people living with disabilities. This TED Talk helps break this down a little more. And lets remember Rebeka's final thoughts: "All bodies are beautiful." Because they are alive, because they have shapes and textures and colors, because their pores have absorbed one minute of this crazy planet, because they have thoughts and feelings and weird little preferences, they are drop-to-the-floor-stunning miracles of gorgeous life." Amen and amen.

Thanks again you guys for all your love and support over the years. So please continue to share and like and comment on these stories. They are so very important. And if you or someone you know would like to share your special needs journey please email me at thislittlemiggy at gmail dot com.

Have a wonderful weekend.


22 comments:

  1. FANTASTIC. Shared. What wonderful insights.

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    1. Right? Thanks for the share... I think this is so important!

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    2. Rebekah6:09 PM

      Thank you for the kind words and for sharing!! It means a lot :)

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    3. I am also now one of the many people who started following you on IG after reading this spotlight. I have a friend born with OI who is in a powerchair, and it opened my eyes when we started hanging out more often. What buildings were accessible? Are the T stops near there accessible? (we live in Boston) How are the curb cuts? And when it snows!? Getting around is a whole other ball game. Last winter with the 100 inches of snow was impossible for people who could walk through the snow, it was completely inaccessible for people in wheel chairs. Hearing her stories opened up my eyes and I think she has some similar insights with you, Rebekah.
      Again, Thank you!!

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    4. Rebekah10:42 AM

      Thanks for sharing your experiences/insights, FlyingPenguin620! It's interesting how much we don't see until someone brings us a new perspective, isn't it? I've had the experience in different ways, too, and it always kind of blows my mind. And YES, the SNOW!! We haven't even had five inches yet where I live, and I'm already so cranky about it. So happy we were able to connect!

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  2. SUCH a great spotlight. I'm a mom with MS. At 41 I've started using a power chair around the house and a scooter out in public. I've lost so much of my independence. Interesting to read other adults who have similar issues. I do believe it's a different struggle when one has led life for 30+ years in a strong, healthy, wonderfully abled body, then suddenly that is completely changed.

    One thing that's the same is THE PRAYERS. The people who lay hands on my body and pray. Please. No. Don't do this. Maybe you mean well, but go home and pray on your own body please, I'll take care of my own praying!

    Also, strangers who feel the need to ask about my condition. Isn't that a bit nosey? Are you going to tell me all your unseen ailments? I don't want to give you an education on MS, that's what Google is for. And I really don't care about your aunt who has had MS for years and is still walking just fine.

    Ok. I'm venting. But maybe someone reading this will learn a little sensitivity. I've learned SO MUCH from all your spotlights I've read over the past few years! THANK YOU!

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    1. Alina Maria--I agree whole heartedly--I think being born able-bodied and later becoming disabled does take quite a bit of adjustment and is where I might use the term "overcoming" more appropriately. I also think you are in a very interesting position as someone who has gone from one side of the coin to the other...you probably see things in a much different way than you did before. My mother-in-law also has MS and while she has still led a very active lifestyle, I think it certainly threw her for a loop at first. Especially as her mother had MS and she grew up watching some sad circumstances play out in direct relation to that.

      However, I also think this is one of the reasons disability rights/advocacy is so important and should be of interest to a lot of people...a white person is never going to become black overnight, most of us are going to stay the gender we were born with, BUT the likelihood that you or someone you love could become disabled in their life is very high. Of course I'm not saying that because we won't personally experience racism or gender bias (if that's the case) that we shouldn't be concerned with those issues...it's just that it's staggering to me to see how much prejudice and ignorance there is surrounding disability when it's A) the largest minority group in the world, and B) a group you or a loved one might very well be a part of one day. Which again brings me back to what Rebekah says about needing to see disability in a much more nuanced way...it's a diverse community, filled with diverse stories....less judgement, more listening.

      And I am really shocked to hear about this praying over your body thing...that is disturbing and inappropriate on so many levels.

      Thanks for sharing your story and perspective!

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    2. You're so correct when you say we won't change race or gender, but will more likely than not be touched by disability. And we ARE the largest minority! I suddenly know how it feels to never see a "mom like me" on the sitcoms and dramas I watch. My friends and family judge sidewalk ramps and store accessibility and we chuckle as we do it because we NEVER, EVER gave that stuff a second thought before it affected me.

      Before I used my scooter, I walked sloooowly with a cane. I learned we Americans are always in a hurry to get places! I wonder how many times I crowded behind someone, cursing under my breath, when that person was surely walking the best she could.

      The praying thing? It's a weird trait of some small towns, I've learned. Super awkward and uncomfortable... Makes for good stories on my end!

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    3. Rebekah6:18 PM

      Alina Maria - thank you so much for your thoughtful and insightful comments! I completely agree -- growing up with paralyzed legs, not even remembering what it feels like to have full use of them, is so very different from losing these abilities later in life. It's something I really want to understand with more nuance (which is part of why I appreciate your comments here so much) -- I wonder about all similarities and differences, large and small. Similarities like the prayers! (I'm so sorry you've had to experience that, too -- it always feels like such a violation to me.) But also the differences that come from such an enormous transition after you've gotten used to living life in one particular way. All that to say, Alina Maria, I'm happy to have connected with you here :)

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  3. Best spotlight! Great, great writing. That was a pleasure to read. Thank you for creating this amazing space to share these incredible stories. I always learn something when I read your posts.

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    1. I'm so glad you think that! I too was just really blown away by this one. (I honestly do think they're all amazing...sharing your story and your heart can never NOT be amazing.)

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    2. Rebekah6:20 PM

      Thank you, Heather and Miggy! It means so much to read these supportive comments :) :)

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  4. Anonymous3:34 PM

    I love the way you write and what an amazing spotlight...power to Rebekah.

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    1. Rebekah6:21 PM

      Thank you for this :)

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  5. Anonymous5:40 PM

    I've read this twice today. I love all your spot lights but this one really is beautiful. Thank you for sharing.
    Keri

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    1. Rebekah6:23 PM

      Thank you so much for these kind words, Keri. It means so much to hear this resonated with you.

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  6. Rebekah expresses her journey, her perspective, and her attitude so powerfully. Really moving. I'm glad you found each other and that you can help share her story.

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    1. Rebekah6:25 PM

      May! - Thank you for your kind words here - it means so much to hear you connected with my story.

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  7. Rebekah, thank you for sharing your stories! I am Mizuki from Japan. I also use wheelchair since elementary school. Since last October, I have moved to Syracuse NY and started researching about employment system for people with disabilities to improve the situation in Japan. I'm sharing my discoveries in my blog, Moon Rider 7 Project http://moonrider7.com/
    I hope we can exchange some ideas!

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  8. Rebekah10:46 AM

    Hi, Mizuki! I had a chance to look at your Moon Rider 7 project -- you are doing such exciting/worthwhile work! I would love to exchange ideas with you sometime -- what an honor! So glad we were able to connect here!

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    1. Hi Rebekah,

      Thank you very much for replying back to Mizuki. I am Jeff, Mizuki's husband.

      We are hosting a online discussion to talk about disability and ability on 19-March. Topic in March is: Society and Disability? The Future of Social Win-Win Strategy.

      Event Page: http://moonrider7.com/online-events-application/

      It will be great if you can join us and share your ideas.

      If you wonder what we had talked about in the past, these posts will give you an idea:
      http://moonrider7.com/tag/ability-for-success/

      Thank you!

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  9. Anonymous11:54 AM

    You got this Girl! :-)
    Alexandra

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