Thursday, April 27, 2017

Limb Difference Awareness Month || What's Really Wrong

This Little Miggy || Limb Differences Awareness Month
What's wrong with you?

What's wrong with you?

What's wrong with you?

Staring. Staring. Pointing. Whispering.

What's wrong with you?

Imagine being asked that question on a semi-regular basis. Now, imagine being asked that question on a semi-regular basis, by complete strangers. Finally, imagine being asked that question on a semi-regular basis, by complete strangers, and you're only 6 years old.

What does that do to a kid? What does that do to a person over a lifetime?

I don't know, but it's been on my mind a lot lately. I'm not just worried about what that does to a kid or a person... I'm worried about what it will do to my kid, my person. Because this is my daughter's reality.

Over the years I've shared our journey of fear to love and I've tried to talk really positively about disability, because I feel positive about disability. While I agree that disability can still be a complicated issue--for example, I certainly would have a hard time if I lost an arm or the ability to walk and some families do struggle more under the weight of caretaking and the medical costs--I no longer view disability as inherently negative and I certainly no longer see disability as an inferior experience in the human condition. A person in a wheelchair in not inherently inferior to a person who can walk. A person with intellectual disabilities is not inherently inferior to a person with a higher IQ. From day one I have always tried to communicate the love, the humanity and even the normalcy of disability because disability is normal part of life.

But sometimes I fear that I've sugar coated it. Specifically I fear that I've sugar coated what it's like to have a child with a disability in a world where disability is rarely represented and if it is, it is most often seen as inferior, sad, undesirable, and wrong.

*****

It occurred to me recently that my identity as mom is most often preempted with special needs mom. I am a "regular" mom too but in the context of motherhood, I can never seem to shake the "special needs" prefix. Do I care more about being a special needs mom than a regular mom? Does everything that comes out of my mouth have to be about disability or special needs? Why is this badge of special needs parenting so important for me to wear all the time?

I sat on these questions for a few days recently.

And during this time we went somewhere as a family and there was a little boy who started saying things about Lamp that were rude-ish. I don't remember seeing his family anywhere, and in fact I barely remember this situation. It's all blurry around the edges because I've dealt with it a hundred times before. (Note: I was going to say a million times, but then I thought "I don't want to exaggerate." So I said a hundred times and now I've underestimated.) But once again I had to educate this young boy while at the same time protecting my daughter's feelings and sense of self.

As soon as that exchange was over I immediately thought to myself, Right. That's why.

Motherhood asks a lot of us. I remember being a mom before I was a special needs mom and it was hard and wonderful and soul-stretching all on it's own. It truly was. But being a special needs mom asks more of me. Strangely, it's not in the ways I thought it would be.

It's not hard being Lamp's mom. But it is hard being Lamp's mom in a world that doesn't acknowledge her or people like her on a macro level.

Because when we don't acknowledge people who are disabled by having them in our TV shows, in our magazines, in our children's books, in our commercials, and more importantly in our classrooms and workplaces, then we often have an overabundance of acknowledgement on a micro level, particularly when we go out in public. People--typically other children, but also adults--point, stare and whisper because they have literally never seen anyone like her before.

This Little Miggy || Limb Differences Awareness Month

*****
On our recent Disney cruise we were informed of an incident in the Oceaneer's club (a kids only club on board the ship that watches and entertains your kids ages 3-11) of a little girl pointing at Lamp and calling her names. The staff went to great lengths to make sure the situation was addressed and rectified. The girl was stopped immediately. Her parents were called and informed. She was removed from the kids club and was later made to apologize to Lamp.

When I asked Lamp about it she sorta brushed it off. As I pressed her for information she got a little annoyed and tried to tell me it was no big deal. She then went on to detail 3 other incidents just from that day. Instead of sending her to the kids' club I felt like I had been sending her into the lion's den.

Thankfully, there was an upside as well--overall she still enjoyed her time there and even had a little band of new friends that rallied around her. But as I walked her into the club that night--as if on cue, like the universe wanted to back up Lamp's words just in case I doubted them (I didn't)--a boy followed us closely asking what happened to her arm, reaching out to touch her hand. Sometimes I forget just how constant this kind of attention can be for her in a new environment. Even with me, her mom, right there telling the boy over and over again that she was just born this way and please stop grabbing her arm, it took a good 4-5 tries before he finally left us alone.

She took it in stride. She always takes it in stride. She has to.

I, however, was guilt ridden for the duration of our cruise. I should have done more to prepare the staff--teach them what to look for, how to intervene and what to say. It also occurs to me that in an alternate reality--one where say children with disabilities were featured in Disney cartoons every now and then or if there was a popular children's book character in a wheelchair, this whole scenario might not be so foreign to them.

As we sat across from our friends that evening at dinner, after watching and hearing about these interactions that day, our friend said incredulously, "So do you guys deal with this all day, every day?"

I exhaled. "Not everyday because we have a safe bubble of our neighborhood, school and church. But in a place like this, filled with lots of children who have never met Lamp or even seen someone like her... yeah, it's all the time."

It feels good, in a validating sort of way, when a wave of realization of how disruptive this sort of input is to one's life settles on someone elses shoulders. I wish it happened more often.

*****

I remember watching a reality TV show one time that featured a woman in a wheelchair. She said the hardest part of being in a wheelchair was dealing with the stares of pity. This was before I had Lamp and I didn't get it. The general feeling in my mind was, Well of course we feel bad for you... you're in a wheelchair. No one would want to be in a wheelchair.

Interestingly enough the very first lessons I learned as Lamp's mom were about pity. She was such a happy baby, she smiled easily and had such a sweet and calm demeanor. Just like any new mother I loved my baby. I was proud to be her mother. Which is why when one woman at church came up to me with a crumpled look on her face and told me that my daughter just breaks her husband's heart and went on to call her a "poor thing" it was a verbal slap in the face.

Oh. There it was. That was pity. The damning, judging, stinging pain of pity. She didn't see a smiling, happy baby. She didn't see the potential for a happy life. She saw a poor thing. Pity is judgment. Pity is damnation. Pity was taking one look at my daughter with her limb differences and assuming her life was automatically sadder, harder and less desirable than someone elses.

Screw you, pity.
This Little Miggy || Limb Differences Awareness Month

*****

Do you have a bank of memories for encounters your child has had with other random children (or adults) over the years? You know just kids they've met at the playground, a restaurant, schools, on the street?  I don't have those banks of memories with my oldest child and my youngest child, but I have them with Lamp.

I remember the couple sitting opposite us on a NYC subway, pointing at our 8 month old daughter and talking back and forth to each other while staring at her with absolutely no discretion or sheepishness for their bold and shameful actions. We were too stunned and too new to this new reality to know what to do. So we did nothing.

I remember the time in Chick-fil-a where we were surrounded by a group of children and one boy said "Why does she have that robot arm?" And another girl said "Why does she have that Barbie arm?" And on the verge of tears I answered them both that they are not robot or barbie arms as their moms sat feet away and choose not to intervene in this conversation.

I remember the little girl who screamed and cried and pointed at my daughter on top of a playground structure that Lamp was scaring her, as a barely 2-year-old Lamp was scooting toward her trying to make friends with the screaming child. Thankfully her mother came and grabbed her away, her eyes locking with mine and she fled with her screaming child, mouthing the words, "I'm so sorry."

I remember the sisters at the bookstore, the younger one saying she didn't want to be Lamp's friend and the older one--maybe 5?--compassionately looked at Lamp and said, "Well I want to be her friend." I was so thankful for that little girl.

I remember the first time we flew with Lamp and her powerchair and as she got off the plane in Florida a crowd of random strangers started clapping for her as she drove her powerchair off of the runway. Not meant to be rude, but it was certainly strange and confusing.

I remember the time PSP's entire 2nd grade swarmed to the side of the playground to stare and gawk at Lamp while she burst into tears on my shoulder and the teachers stood by doing absolutely nothing to pull the kids away from my daughter and back onto the playground.

I remember the two separate times we went to a specific playground and once again had a circle of children gathered around Lamp as she tried to play--this time the circle including teenagers--who we had to shoo away and tell them to leave her alone, she just wants to play. Again, this happened on two separate occasions at the same playground. We've never gone back to that playground.

I remember the kids who stood in line at playground downtown, pointing and staring at her mere inches away, when I bent over and put my face in their line of sight and said HI, loudly as we often do to let people know we see them staring.

I remember.

*****

My hope is that when I share these stories people will read them and re-think the way the world is structured. Perhaps you'll see the discrimination and the lack of representation in the media and agree that all of this contributes to a problematic reality for our daughter and other people with disabilities. I know that's what happens to me when I read stories from people of color who talk about discrimination or when I read about sexist policies or discrimination against the LGBT communities.

My fear is that it doesn't work the same way with the disabled community.

My fear is that while these stories have perhaps tugged at your heartstrings, the disability community is still so other that we don't connect it with the same need for humanity, social awareness and inclusion. Disability is still so other that when the nation of Iceland boasts they haven't had a child with Down Syndrome born there in 9 years due to selective abortion, no one seems to bat an eye or call this a humanitarian crisis. We still see the disabled as so other that when 19 disabled people are murdered in Japan it doesn't even last one news cycle and no one calls it a hate crime. We still see the disabled as so other that it is completely legal to pay them less than minimum wage. We still see the disabled as so other that they are the only minority group that can still be legally segregated at work and at school. (see video here)

So what do I want from all this? Here's what I want:

I want the world to make a space for my daughter. I want it to be a safe space that is accessible by wheelchair and accessible by opportunity.

I want to see more disabled bodies in the world around us doing everyday normal things. I want to see them in magazines, on TV (thank you Speechless), in children's books, in movies (preferably not committing suicide because they're disabled), in music, in plays, in school, in day-to-day jobs and in places of business.

And while I'm putting my wants out into the Universe I might as well tell you all that I have written a children's book featuring a character with a prominent disability and I have spent the past several months trying to find an agent willing to represent me and this book. I want someone in the publishing industry to realize that we need beautiful children's books filled with illustrations of human children (not animals, not toys) who have disabilities and that it would be very normal--i.e. a reflection of the actual world we live in--to have picture books with such diverse children in them.

I want to see more education in our schools about disability. I want to see parents engage with their children in a conversation when they meet a child who is disabled. (My personal guide here.)

This Little Miggy || Limb Differences Awareness Month
I add my voice to the many, many, many, manymany, many voices out there trying to educate and share messages of inclusion. The messages and the disabled experience itself are too vast and wildly subjective to distill into one overall message, so I won't try. But I will say this:

There is nothing wrong with being disabled. But there is something wrong with society's overall view of disability.

Because when the world looks at a bright, happy and smiling six year old girl and constantly asks her, what's wrong with you? I can't help but want to grab society by its collective great, big shoulders, give them a vigorous shake and say,

No. What's wrong with you?

42 comments:

  1. Thank you for inspiring me, Amy. Lamp makes the world brighter.

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    1. Right back atcha Megan.

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  2. Lamp is beautiful! I hope she gets the chance to play with my 6 year old at Camp No Limits sometime!

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  3. I should mention my daughter just peered over my shoulder at the picture above and I told her it's a blog about a girl with limb differences and she said "she's very pretty, she looks like Belle. Does she go to camp?"

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  4. I invite you to visit www.ellieextraordinaire.blogspot.com to see the book I put together before Ellie started kindergarten this year.

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    1. I loved your book! We did something similar for Lamp when she started school--not a book but we had an educator from a local children's hospital come and do a presentation to each and every class introducing them to Lamp and talking about the same things your book talked about. I just looked up Camp No Limits and we'll have to look into going sometime. There was another camp we were going to take her to, but they moved the age limit back. Anyway, thanks for saying hi!

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  6. A few times I found myself saying, "Hell to the yeah!" Screw you, pity. And there is nothing wrong with her, but there is something wrong with a world that would ask that question!!!

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  7. Awesome post totally agreed with everything.

    #mywifeisnotyourinspirationporn

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  8. Can I get another amen? AMEN!
    Thank you for this post.

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  9. Wonderful post. I hope your children's book finds a publisher - I would buy it and read it to my son in a heartbeat.

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    1. Thank you! I'm gonna hold you to that. ;)

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  10. Wonderful post, Amy! You've made a difference for me personally, I want you to know!

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  11. Anonymous7:29 AM

    Beautifully said. I wish you all the best with your book and look forward to one day ordering it on Amazon. :)

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  12. Anonymous7:37 AM

    This is a beautiful post. Thank you for sharing your life and helping to better the world around you.

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  13. Anonymous9:19 AM

    This is the best thing I have read in a long time. Thank you.

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  14. Maybe you could try crowd funding the book, I certainly want a few copies to put in our local library and primary schools, i'd contribute if I could get a copy as a reward, that's how I have seen some funding work. Once again a well thought out piece of writing that makes me think. Congratulations and all the best.

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    1. Thank you. I will definitely look into alternate routes if I don't find a publisher.

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  15. Anonymous11:40 AM

    The subject of inclusion has been on my mind lately as I drop my 3yr old grandson off at preschool three days a week. Although ethnically diverse there is virtually no diversity in physical or intellectual abilities. I was talking with the director about this and it has been weighing heavily on her mind as well. The biggest hurdle they face is monetary--they must pay separate staff to help assist any students with disabilities. I've heard this many times before in the public school system as well as watched that play out. There has to be a way of addressing this. Kids are SO accepting if something is just a normal part of their lives. There has to be ways of getting kids together so they can learn about one another and embrace the wide variety of the human condition.

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  16. Thank you, thank you, thank you for this! As an adult with cerebral palsy, This post really hits home. I have a bank of memories from my life. Similar situations. The stares, the whispers, the teasing, the pity. Hearing about your beautiful daughter going through similar situations all these years later, it confounds me. I wish it was different. I wish The experiences I (and others before me) had served as payment toward your daughter (and other children) living without these moments. Alas, all I can say is that I understand. Kudos to you both for being vehicles for change. All the best. -K

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    1. Yes, I too hope that one day we can live in a world where these moments aren't common place. I hope we get there.

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  17. I am a tennis coach and my athletes just happen to use a wheelchair on the court. Most of my players are adults but wherever we go, the questions and stares still amaze me. My daughter grew up around my team and is currently a graduate PT student. Last week her assignment was to go to a public place with her "therapist" in a wheelchair. While at the coffee shop her first text to me was "how do your players deal with the constant stares"? I have no answers but I love your blog and your attempt to educate, educate and educate some more!

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    1. I'm so glad she expereinced that. It really helps when other people get a taste of it because I think people sometimes think we exaggerate or that "it's not that bad." And sometimes it isn't "that bad" but other times it's off the charts. Thanks for the love and support!

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  18. Your voice is powerful my friend. You and Lamp are amazing and are changing perspectives in such positive ways. I respect you both so much.

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  19. Lamp is exquisite in her peach frock, blowing dandelion fairies to the wind! And I would have to agree with that indeed, she looks like Belle, especially in the photo with her lovely sisters.
    I love this post. I've thought how difficult it must be to be thrust into the public square each and every time you step out of your community, I have no personal experience, and can only learn from others, and as you continue to educate, I can try to share and to be better. And I have to add that right from the beginning, Lamp was born with that extra awesome beautiful face, truly! Just like her sisters. :) <3

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  20. Brought me to tears, especially at the end. The longer I have been a special needs parent, the more I realize most of my fears come from how the world will treat my kids or view them. this was a beautiful post.

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  21. Anonymous1:53 PM

    Great post! The last line is perfect.
    I want read your book so so much.

    Liseli

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  22. This is such a brilliant post. It says so much I want to say to the world. Let's start a publishing house? I too have written a book! Currently at stage of illustration.

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  23. So powerful and heartfelt. I have learned so much from all your posts. Thank you for sharing

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  24. Anonymous2:04 PM

    Hi Miggy, yes so many instances of people staring and saying rude things. ALL THE TIME. Just yesterday, a Mom told all the kids that she came with to leave to go elsewhere as soon as she saw my daughter approaching. And my daughter loves being around other children is why she was going towards them. Not that she would know how to play with them. She just wanted to be in their general area.
    God forbid I take my daughter out anywhere. Why are people so horrible? Did nobody teach them anything about manners and kindness?
    Maybe we need a campaign with a catchy slogan, like the one about not using the R word, or the one that says “Nothing about us without us” about people who want a say in their treatment. I'm sure there are more. Slogans are easy to remember.
    Mel in Fort Collins

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    1. I'm sorry Mel. There are no easy answers are there?

      ((((hugs))))

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  25. Beautifully written. I have learned so much about this issue from your blog.

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  26. Love this one. Feel the exact same way. Preparing for next months IEP and Izzy's teachers trying to pull her out of an inclusive classroom more and that fight. This year I've been working on legislative advcocacy as Oregon prepares their 2017-19 budget and looking at the programs they are cutting, meeting with senators, house reps, aides and sharing our stories how this cuts would affect our kids IRL. What amazes me is the ignorance of so many adults in positions of political power that we meet with - how truly unaware and ignorant of what disability is, how varying it is, how state programs help so many children and families and how cutting these programs can break up families, force parents to have to put their children in state run homes because they can no longer physically or financially meet their needs. There are so many obsticles and barriers that no one understands unless they seek to learn more, to understand more, to see differently. I dream of seeing more disabled bodies in positions of legislative and community power. Just as were seeing more women running for positions since this election, I hope to see more disabled faces on our school board, running for local and state elections. I hope, I hope, I hope.

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    1. What? I'm am SO SORRY to hear that. I didn't know they could just pull her out like that and frankly, I'm not surprised by the ignorance of the adults in positions of political power. That's why we need moms like you who KNOW! Yes we do need more disabled bodies in positison of legislative and community power...and maybe even special needs moms. Go get 'em I say.

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  27. I love how articulate you are! As a mom I will do anything in my power for Lamb and people with limb differences to be able to lead their lives as they wish and as they deserve! Thank you for sharing your beautiful thoughts as well the photos of your beautiful girls!

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  28. LOVE this post! Thanks so much for being such a strong advocate for your daughter and other kids with disabilities.

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