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TEDx Talks
Published: 2017-09-05
Source: https://www.youtube.com/watch?v=yuH29lmpskA
every year about four thousand babies in the United States are born with some form of congenital limb loss it's often due to a condition called amniotic band syndrome any other band syndrome is not due to genetics it's not really caused by anything in particular it just happens the stigma of being born missing part of a limb can follow what child throughout their entire life and he
can even change how their identity forms but fast forward and these kids grow up to live normal lives and I want to share with you some of their incredible stories so in April I just got off a long flight and I'm sitting in a coffee shop talking to a mom and a dad about their experience raising their two sons and they told me all about it
baseball games tough days at school all of the legos they have a lot of legos and they walked me back to what it was like when they saw the ultrasound with their first and second son and they saw him kick for the first time and had so many questions would he grow up to have his dad's compassion or his mom's resilience and they started to imagine
those first steps birthday cakes and graduation and the specials came in and she told them you're having a healthy baby boy they were ecstatic but then her voice began to change I do too and amniotic band that formed in the womb their son would be more in the missing part of his right arm and the family took a minute to really hear what the specialist was
saying what would this mean for their son what would it change would they do and the specials continued and said from here you have two options do you still want to continue the pregnancy from before the moment this little boy was born people have been telling him that he's broken at school growing up other kids would believe him and teasing to remind him that he's not
normal other parents would quietly whisper apologies to his mom when they would walk by but for this family their dreams for Zachary never wavered they knew that he could and that he would overcome any obstacle any challenge anything but for the boy it was hard questions the doubts it really wait on him and he was often asked what happened your arm and he simply respond without
a smile and say I was born this way and these interactions have an incredible impact on forming a child's identity not surprisingly children who aren't afraid to go to school or interact with others do better having people in your life who routinely doubt whether you can handle something can destroy your confidence it can change what goes you run after and you can even keep you from
achieving what you want to achieve these moments of shame we've kids asking the universal questions who am I and my broken and my left and these type of questions tend to drive parents the conversation about prosthetics but perfect prosthetics and access for children it's still really complicated whether it's due to high costs and a functional electric device can be well over fifty thousand dollars or the
fact that doctors insurance companies are a little hesitant because children grow so quickly can you imagine every time your nine year old out through their shoes you have to replace their expensive bionic arm that would really be a lot and because of this the standard for children's prosthetic even today tends to be a cosmetic only device no function or perhaps a hook device you wanna take
a guess at what the rejection rates are for kids who do not want to wear those kind of arms it's high quite high and that's what my team is working to change we think that we can use technology to be able to help everyone from kids to adults be able to tackle any challenge they have any dream that they want bionics are improving to the point
where now artificial limbs can tackle all those challenges but it's so much more than just about function turns out if you ask the kids it was never even about being able to pick things up let me help you picture so you're in the grocery store and you see someone walking over and you know that they're gonna ask those awkward questions what happened to you wasn't alligator
and these are real questions that are bionic kids have been asked it's hard for anyone in that situation talk about their experience from a position of strength but especially a child and if you're wearing a heavy dull plastic like device the prosthetic has already started the conversation for you so we decided we would go in an entirely different direction and we use three D. printers to
do it color confidence an expression this is Holly airs so Holly wore her custom creation on the New York fashion week runway she wanted to help promote inclusivity and some really cool fashion we use three D. printers to bring together these beautiful artistic designs and functional narrow prosthetic engineering to give kids Iron Man technology at a price that solo we can donate every device we believe
that it was never about function it was always about kids believing that they are enough an expression helps them find it the reason that traditional prosthetics have such high rejection rates is not because children aren't mature enough to handle them it's because they're too heavy they don't have the right functionality and worse dull plastic feels like an apology for being broken so we decided at our
kitchen table that our team would try to change all of that we designed for function and expression we've had the kids draws pictures of what they wanted their bionic arms to look like they did not want it to look like a classic and then we got to work from the ground up three D. printing these beautiful creations that could grow with them over there their own
growth spurts and now that same conversation in the grocery store has completely changed now people stop and they say that is such a cool arm how did you get it or how does it work and the change in that conversation can radically altered the development of a child's identity so what does that look like the kids well at school on super hero day Alex now addresses
this himself now that's confidence he has the best school picture day of any kids right Alex tells us now that he wants to go to college he wants you to use technology to be able to help other people just like him and be able to tackle whatever dream they want when we first met Alex he was afraid to go to the grocery store because of all
of those awkward conversations and what he had done to his identity what a transformation any has been wearing her bionic arm for awhile now and she loves the color and the expression it matches her cell phone case heard her yeti Cup even her dress it is really wonderful he dreams of becoming a pediatric oncology nurse or a dolphin trainer she's still deciding right now but it's
so clear that her empathy and compassion just overflows she's already trying to encourage other kids just like her that there is a future and there are those dreams that they have that they should run after full steam it's really wonderful identity plays an enormous role in how we perceive the world what we do with our free time even the goals we set people with disabilities people
with impairments rarely identify with the idea and the label of disability that label is projected by society and we all worked exceptionally hard to prove to everyone else around us that we are enough and that starts as young as the kindergarten are on the playground and it radically changes how we grow up how we feel and what we do so since starting to wear their bionic
arms kids like Zachary and Alex have seen incredible growth in their confidence in their grades at school and what they tell us about their dreams for the future they tell us now that they all want to go to college they all want to use technology for something more impact their communities they envisioned themselves as fashion models engineers anything they can set their minds to and we
believe them by re framing the challenge with technology and art we've helped unlock their secret identities an expression helps them get there now we need to re frame how we look at the idea of disability and change from a conversation of asking MI enough two one of being able to celebrate unique expression and differences we want all these kids to know that there truly are no
