Friday, April 27, 2018

Special Needs Spotlight || Alexis


Hi! My names Alexis and I was born without my left hand. I live in Edmonton, Alberta, Canada and I am the creator of "Stump Kitchen," a YouTube Cooking show dedicated to celebrating limb difference, gluten free vegan cooking, and all of the beautiful ways we move through the world. I am a huge choir nerd, and I have sung in choirs since the age of 5! I also love to play my ukulele, and I lead a small ukulele choir for folks with disabilities! I am thrilled to be a part of the This Little Miggy Blog!

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Miggy: Welcome Alexis! I'm really excited to have you on today as we always love meeting new limb difference peeps, and especially funny limb difference peeps. As per usual, let's start at the beginning. I'm assuming you were born with your limb difference (correct me if I'm wrong!). Do you know how your parents first learned about your difference and how they first reacted? And what do you remember about your difference in your early years and how did those years shape you?

Alexis: Haha you are too kind, thanks for the compliment! I’m so glad you find me and my work funny! So, when I was born the first thing the nurse said was ‘Oh, she’s a redhead!’ It wasn’t until a few minutes later, after I was passed to my mom, that mom noticed my arm and asked the doctor if everything was OK. Because the ultrasounds didn’t catch my limb difference, the fact that I was missing part of my arm when I was born came as a real shock to everyone in the room. The doctors took me away to do a bunch of tests as they were quite concerned… but my dad, who has a psychology background, was the one who ultimately got to do my Babinski reflex test and all of the other ‘newborn’ tests. He actually helped to calm the medical staff down, and make my entry into the world a little less chaotic.

Nobody could really tell my parents why I was born this way. At first they thought Amniotic Band Syndrome, but that was just a guess. But after a few months of doctors guessing (and even suggesting invasive surgery to split my arm into a claw-like hand and remove my tiny fingers) my parents had had enough. They thought I was perfect just how I was, and that was that :)


Miggy: Piggybacking off that last question, can you talk a little about what your childhood and family life was like growing up? How did your family treat your differences and did you have a lot of support from your parents and siblings? Is there anything you wish they would have done differently?

Alexis: Growing up I didn’t really pay much attention to my limb difference until I started school at age 5. Leading up to then, I had worn a series of different prosthetics, including a body-powered hook and a stationary hand. My doctors and physiotherapists had all recommended that I start to use prosthetics early - that’s just what you did back then. But my mom says that when she would put on my prosthetic when I was a toddler, I would just sit there like a lump; similar, I imagine, to how a cat sits after you put a shirt on it. So my parents followed my lead and didn’t force me to wear them if I didn’t want to. I still wore them occasionally, but didn’t find a whole lot of use for them.

My little sister Ainsley was born when I was 2 and a half. She and I were practically inseparable for the first 6 or 7 years of her life! When she was just old enough to talk, she named my limb difference arm ‘Bebe’, which I think came out of her trying to say ‘Baby Hand.’ Ainsley LOVED Bebe so much. I would make him come alive for her and put on little plays with Bebe as the hero, and my right hand (Biggie) as the bad guy. Ainsley helped me to appreciate and love my limb difference from the very beginning. Decades later and she still refers to my arm as Bebe sometimes, and I often make her laugh by doing tiny renditions of our childhood plays.
Miggy: I know I speak for a lot of special needs moms when I say I worry about my daughter being bullied for her differences. What was life like for you socially growing up? Were you ever bullied? If so, how did you handle it? Do you have any advice for special needs moms in dealing with these sort of situations?

When I started kindergarten, I felt well-equipped to deal with questions about my arm. My mom and sister and I would actually play ‘school’ and help me practice the things I might say to someone who asked me about my arm or said something mean to me. Because of this, I came into school ready and willing to talk about my difference, but to be honest, I don’t recall having to talk about all that much anyway! I had lots of questions of course, but once they were answered, the other kids would move on to the next subject.

Junior High was a bit of a different story. This was the time of my life where I was coming aware of my body and how the world perceived it. I started to become self conscious about my arm after I saw a video of a dance recital I had done. I remember crying to my mom and questioning why I had to be this way. She was so good during this hard time. She listened and let me vent, without trying to fix everything for me. She reminded me of my beauty, inside and out, and of how I bring so much joy to my family and friends around me. She let me cry in her arms. For me that was what I needed, because these hard feelings only lasted about 3 days, and then they lifted off like fog after the sun breaks.

I was bullied once in Junior high by a friend of mine, during a period where we were fighting about something. I remember coming out of the bathroom and seeing her walking towards me. She stuck her arm into her sleeve as if to imitate my arm, and she made some horrible gestures at me. It was absolutely nauseating in the moment. But I also remember feeling like, wow, how little do you have to be to resort to making fun of someone’s physical appearance? I knew in that moment that I would never do that to anyone else :)


Miggy: You have a delightful and funny Youtube cooking show called Stump Kitchen. I love how you integrate your limb difference, aka your stump, as an integral part of your kitchen skills and humor in teaching something you're passionate about. How did Stump Kitchen come about and what has been the overall reaction from your audience?

Alexis: I remember always loving my Stump throughout my life (except for those 3 days in Junior High :)) but as I grew up I kind of forgot about this rad part of me. When I became a Vegan (and after being diagnosed with a gluten intolerance) I knew I had to start cooking for myself in order to have healthy, balanced meals. I hadn’t really cooked much up to this point, so getting into the kitchen and finding out that I actually loved to cook was a big surprise. The best part, was finding out all of the cool ways I could use my Stump in the kitchen! It can be a lemon juicer, spatula, potato masher, dishwasher - you name it! I had to capture this joy and awesomeness on camera, so I filmed on episode of me making waffles and put it up on Youtube. The video was a huge hit, and that’s how Stump Kitchen began!
Now families from all over the world send me messages and pictures of them cooking with their awesome kids. I get lots of great comments from kids and adults with limb differences telling me that my show has brightened their day, or has even helped to get them into the kitchen! Some people love the show because I embrace my imperfections in the kitchen, others love the role-modeling for their kiddos (with or without limb difference), and because I swear and wear sweatpants (don’t worry, I have a whole kid-friendly playlist!) I've also got a series of Stump Kitchen cooking with Kids videos on CBC Parents which has been really big for Stump Kitchen! You can check them out here
Miggy: Speaking of funny, I’m a big believer in seeing the humor in life and learning to laugh, and frankly I have come to believe that when it comes to disability the limb difference community has the corner market on humor, so can you share some funny stories that relate to your limb difference? 

Alexis: When I turned 10, I had my birthday at Chuck E Cheese. Great party :) I loved the ball pit, so I spent a lot of time in there with my friends. I had a myoelectric prosthetic arm at that point, and it was kind of heavy and clunky. I liked it, but really just for the party tricks! After playing in the balls for a while, I got so sweaty that my arm slipped right off into the pile of rainbow balls beneath me! I remember my poor dad had to get into the ball pit, dig around in the kid-sweat and old bandaids to find it. He ultimately did, and passed it to my mom through the mesh fence surrounding the pit. For the rest of my party my prosthetic arm sat in my mom’s purse, with the hand sticking out of the back!

Miggy: I could be wrong, but I'm assuming that your disability affects you very little as it pertains to actual ability, but that the biggest impact you deal with is social stigma, staring, pity, etc. Do you find this to be true, and if so can you tell us how your disability affects your day-to-day life in terms of these things? How has it changed over the years? Also, 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?

Alexis: You got it! I use my stump in lots of different ways, and throughout my life I have found my own unique way to do almost everything. My parents were great about letting me try stuff on my own, and not stepping in to help all the time. This really helped me find my own path. Interestingly, I assumed I couldn’t tie my hair up into a ponytail. I didn’t mind, I just thought, this isn’t something I can do and I am ok with that. But when I turned 21 I thought, wait, let’s try this! And after about half an hour of practicing, I figured it out! I was all puffed up like a proud peacock after that discovery.

I didn’t notice this much as a child, but now that I am an adult I get a lot more direct comments about my arm. I remember one encounter, when a woman told me she was so sorry about my arm, and then asked me if it was hard to find a husband because of it. I really didn’t know what to say - I wanted to laugh and yell at the same time.

Also, I drop things perhaps a little more often than the average bear. I have become used to this, and many people find it endearing, but once in awhile I’ll drop something special and I will get quite frustrated - but only for a moment or so. And yes, I also deal with staring - every day - so I’m used to it, but I don’t always have the energy it takes to put up with the constant onslaught of the ‘gaze.’ I hate how it sometimes makes me want to hide my arm from others. I think folks need to be really conscious of where their eyes are looking - I think that if there were more positive representations of disability and diverse bodies in the media there would be less of a need to stare when we saw someone different - because it would just be commonplace!
Miggy: Lastly, is there anything else you want people to know about you, your life or disability in general? If you could give any advice to mothers with physically disabled children, what would it be?

Alexis: Love your children unconditionally, and do your best to work out any of your own anxieties or worries about their disability as soon as you can. Kids pick up on our energy, so if we feel nervous, ashamed, or resentful, they will know. Your child’s difference can be a beautiful source of love for the two of you, and bring you closer together in very special ways.

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Alexis, I adore you so much. I watched one of your videos with my daughter where you talked about how sad it is if you don't have a stump to cook with and now she proudly proclaims how she feels bad for people who don't have a stump! I love it! I just love to see you fostering positive body image with your passion for cooking and generally showing the world that it's just not that big of a deal. You obviously had a wonderful and loving family. The stories of your sister and Bebe brought a smile to my face. Lastly, your advice to parents of kids with disabilities is SPOT ON. I've learned that it's a much different position to be in as a specail needs mom vs a person with a disability. I had to confront my own prejudices and really open my eyes to a reality that was all around me, but that I never knew existed. Thanks again for sharing your story and we'll continue to tune into Stump Kitchen!

As always if you or someone you know would like to participate in the special needs spotlight email me at thislittlemiggy at gmail dot com. 

Have a great weekend!
XO, 
Miggy

2 comments:

  1. I don't comment here very often (despite reading regularly, as in, "Oh, it's Friday, I haven't checked if there's a new SNS yet") but I am absolutely going to show Alexis's videos to my cooking-loving kid.

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  2. Anonymous12:08 PM

    I do enjoy all of the Spotlights, but I do specially like reading the ones from adults. They've certainly made me more aware of when I may be thinking in a ableist way. I've realized why it's important to say, for example, a child with autism, rather than "autistic child." And I cringe when I see someone write (or hear) "Down's kid". Anyway, thank you Alexis for sharing your story.

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