Friday, February 05, 2016

Special Needs Spotlight || Ella

type 1 diabetes || This Little Miggy Stayed Home

Hi there! I am super excited to be part of the spotlight. We've followed along from the beginning, and I always learn something new. I am Alissa and  am mother to three fabulous girls (7, 4 and 1) and married to the love of my life. I am a Pediatrician by day (well, 2 days a week anyways) and momma by night (and those other 5 days). My darling Ella was was diagnosed with Type 1 Diabetes a few years ago, 2 years and 8 days ago, to be exact. We just celebrated her “diaversary.” Ella is the kind of kid all parents of a diabetic dream of… she is responsible, smart, observant, helpful, kind and an all-around good kid. She makes it all look easy. We are lucky to be along for the ride.

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Miggy: Well hello Alissa. We actually go back quite a ways as roommates from our college days--you're one of the few people who knew me when I had pink hair! Additionally, you have been a huge support and help over the years as you are a pediatrician. You reached out right away when you heard I was pregnant with Lamp and you even gave me access to an article in the American Journal of Pediatrics that I eventually gave to our geneticist who confirmed, through this article, that our daughter most likely had microgastria and limb reduction complex! (Did you even know that?) Phew! That's a lot of history. But today, we're here to talk about your daughter Ella and her diagnosis with type 1 diabetes. Let's start at the beginning, when did you start to see signs and symptoms that something was off with Ella? How long did it take for you to get an official diagnosis and do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?
Alissa: You not only had pink hair, but you rocked it LONG before anyone else even thought of it! A trendsetter from the early days. (insert Miggy: I’m blushing. Please continue…)
Ella was diagnosed in January of 2014 when she was 5-years-old. We were on a family vacation on the Big Island of Hawaii. After a few days of living in the same hotel room I noticed that she was getting up a few times in the night to go to the bathroom and she was drinking more water than usual. At her recent 5-year-old check-up we discovered that she had only gained a pound over the past year (in reality she had gained a normal amount of weight, but she had been losing weight for a month or so). We didn't think too much of it, and I had actually packed cans of Pediasure to bulk her up. But the triad of weight loss, lots of drinks and lots of potty breaks made my pediatrician brain a little worried. On the second or third day of our trip it started to rain and our plans of exploring the island were shelved. Since we weren't doing much, I decided to stop fretting and just make sure Ella was fine. I called the hotel doctor (did you know such a thing existed!?!) and arranged to test Ella's urine at a local clinic. A few hours later the doctor called me and let me know that her urine had lots of sugar in it. I immediately knew she had Type 1 Diabetes. In that instant I was acutely aware that our life had changed. I knew enough about Type 1 to know what it meant for Ella and our family. I broke down and wept. But, in a gift from God, I was able to quickly snap out of it and was given clarity, peace and calm for the rest of the week. We immediately went to the small island hospital where they ran some confirmatory tests and officially diagnosed Ella with Type 1. We spent the night in the hospital, but because of my background they condensed our diabetes training from the typical week to a few hours and we were able to go home the next day. We were lucky that we caught Ella's diabetes so early. Left untreated, Type 1 causes kids to get really, really, really sick. Thankfully, Ella never got to this point. With hindsight, however, we realized that she had lost her spark. During the months before her diagnosis she had been dull and emotional. One day she said, "Sometimes I try to have day where I don't whine, cry or fuss AT ALL. And then I cry and I think, 'Maybe tomorrow's the day."  The poor girl was trying so hard to be good, but her blood sugar was all over the place and she felt crummy!  Within hours of being out of the hospital and back to the hotel Ella was swimming and laughing and there was literally a twinkle in her eye.
I actually think I dealt with the Type 1 better early on. I was cheery, gung-ho and all "save the pancreas!" As time goes on, and the reality of every single day becomes more clear, I’m a little more down on it. Initially I was convinced that we would have a cure, or at least major major advances, by the time Ella is a teenager. I now know that diabetics have been promised a cure within 5-10  years for the last 30 years and I’m less optimistic. But the advances in technology and the way we manage diabetes has definitely improved. And that makes quality of life worlds easier. So I guess my feelings on it now are more realistic with the long haul in mind.

type 1 diabetes || This Little Miggy Stayed Home

Miggy: As you stated in your email there is a lot of misconceptions about type 1 diabetes. Can you educate us about type 1 diabetes (as opposed to type 2)? Could you also explain how type 1 diabetes affects Ella and your family's day-to-day life?
Alissa: Type 1 Diabetes is an auto-immune disease. For some unknown reason (probably a combination of genetics and a triggering event, maybe a virus) the body gets confused and starts attacking the cells in the pancreas. This leads to the destruction of beta cells, the cells that make insulin. Insulin is the key player in digesting carbohydrates (sugars) and allowing the cells to use it for energy. Because the body doesn’t make enough insulin, you have to give it via a small injection.
Type 1 typically presents in childhood, although it can show up in adults. Signs of Type 1 are weight loss, being thirsty and drinking lots, urinating frequently and/or having accidents at night, fatigue, sudden vision changes, increased appetite, fruity, sweet, or wine-like odor on breath, labored breathing, vomiting, and unconsciousness (obviously, a late sign). Testing for Type 1 is super easy. All you need is a urine sample. So if you are even kind of worried about your child, just get them tested.
Of the 29 million people in America who have diabetes only 5% have Type 1. Given that they are both usually just called “diabetes” it’s inevitable that there will be some confusion. While the two are related, they are very different.  This can sometimes get annoying. (Check out Type 1 Nick Jonas’ response to someone getting the two confused here) When I asked Ella what she wished people knew about Type 1 she said, "It's okay for me to eat sugar. And you don't get Type 1 because you ate too much sugar!" Ella can eat whatever she wants. Cake, candy, ice cream...bring it on. But every morsel of food that goes in her mouth needs to be accounted for. And that’s where it affects our day to day life. The pancreas is an amazing beast. It figures out how many carbs are in whatever you are eating and gives you enough insulin to cover it. If you are fasting or being active and you use up all your glucose, it taps into a supply in your liver and keeps things in check so you don’t pass out.  Since Ella’s pancreas is a dud we try our best to do its job. We weigh food, calculate and make lots of guesses to figure out how many carbs are in everything she eats. Then we (well, it used to be we—now it’s her pump) calculate how much insulin she needs for that amount of food. Her insulin pump has a teeny tiny tube inserted into her stomach that we swap out every 3 days. She also has a cool device on her leg that keeps tabs on her sugar at all times. We change that one every 6 days. She still has to check her sugar 1-2 times on a good day, 10-12 on a bad day. But she’s got sweet calluses on her fingers so it doesn’t hurt that much.  
For the most part, Ella leads an incredibly normal life. She plays the piano, does gymnastics, and loves playing with her sisters and friends. She is smart as a whip and is in a Chinese-immersion program at school. We’ve helped educate her teachers on how to help with her diabetes, and she has a helper at lunch who makes sure she checks her sugar and gives herself the correct amount of carbs the food she will eat.


Miggy: What are the biggest worries you face for Ella? Conversely, what are your hopes and dreams for Ella?    

Alissa: Oh, the worries. It’s part of my training to always default to the worst-case scenario, which is a blessing and a curse. Every time she is away from me I worry that her glucose will drop and she will have a seizure, or worse. This makes it tricky when she wants to do normal 7-year-old things. Any time she goes to a new friend’s house, or does a new activity or sport I have to decide how crazy I want to sound when educating the adults on diabetes. I vacillate between, “If you mess this up she could die! Be really really careful!” and “It’s no big deal, just treat her like you treat everyone else.” I’m learning to walk the middle ground. Every night I worry she will go low. One of the rare complications of Type 1 is going really low during the night and never waking up. It terrifies me. We now have a monitoring system in place so if she is out of whack I will get an alert on my phone. But I still check on her nearly every night.
On a broader scale, I worry about the long-term health effects of diabetes. We try really hard to manage her sugars well, but we aren’t perfect. While we hope for a cure, and research is promising, currently this is a life-long disease. I also worry (well, not really worry, but think about) the fact that she will always need good access to health care.
I have the same hopes and dreams that I have for my other girls. I want her to grow up healthy and happy. I want her to find love, be kind, be successful in whatever brings her joy. I want her to have healthy pregnancies and bring me grandbabies (far, far, far in the future, of course).



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?  


Alissa: When Ella gets low, she gets grumpy and emotional. Once, a few months after diagnosis, we were at a family party and she came in weepy. I thought she was just being whiney and said, “Ella, you are acting like you are 40 and you are not! Pull it together!” We checked her sugar and she was 36 (which is crazy crazy low). She reminds me of that one from time to time…
The whole family gets in on the carb counting act, which can make us look like super health nerds. The other day we were waiting to get my oil changed and my 4-year-old was playing with an app on my phone that tells you how many carbs are things. “Mom! There are 15 carbs in half a bagel! There are 5 carbs in a cup of green beans!” The nice lady next to us thought we were cuckoo.


type 1 diabetes || This Little Miggy Stayed Home

Miggy: Type 1 diabetes is not super visible as far as a condition goes (yes there is a pump, but from what I have seen this is usually under clothing) and as you said above there is a lot of misconception about it. How can people best approach or respond to Ella and her diagnosis? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  
Alissa: Ella and I differ on this one. I want people to ask questions so we can have a conversation. Ella just wishes people would ignore it and treat her the same as everyone else. When kids ask her about her pump (they often think it’s a cell phone), or what having diabetes means her stock answer is, “I have diabetes. My pancreas doesn’t work. It’s complicated.”
When I am leaving Ella with a new adult and they find out she has diabetes, they occasionally go white in the face have fear in their eyes. I love it when people ask me to explain what diabetes means for Ella and for them while she’s in their care. I worry that Ella will be excluded from things because people are afraid of the Type 1 (this hasn’t happened, as far as I know. Just mom worries).


Miggy: Since you are both a mom and a physician, if you could say something to another mom who is just starting on this journey of type 1 diabetes, what would you say?  What would you say to yourself if you could go back in time?    
Alissa: You will have days and weeks where you manage it with the greatest of ease and can conquer the world. You will have days and weeks where you are drowning and want to curl up in a ball and hide. Both kinds of days come and go. Don’t let the hard days overwhelm you. Ups and downs are what this life is all about. You’ve got this. And by no means is it all bad. Since Ella’s diagnosis we have become tighter as a family. Ella has become incredibly responsible. Even if we could give Ella her pancreas back, I’m not sure we would. (Eh, that’s not true. We would. But I wouldn’t give up all the things we’ve gained and learned).
type 1 diabetes || This Little Miggy Stayed Home
Miggy: What is the biggest lesson you’ve learned since becoming a type-1 diabetes mom?
Alissa: Empathy. Every day when I go to work I take care of sick kids and worried families. I now do it with more kindness and understanding and patience. Life is hard for everyone. For some the hard is easy to see, and for others it is not as visible. But for the most part, everyone is just trying their best and can almost always use a helping hand or a kind word.
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Alissa, this was fantastic! Thank you so much--it's always fun to interview someone I know in real life. First, I loved your honesty... knowing that your daughter has type 1 diabetes and then dealing with that day in and day out are 2 different things. Not to mention that as of right now, this is a life-long condition. That is no small thing. And I was surprised (maybe even relieved?) to hear that managing type 1 diabetes can sometimes be tricky EVEN IF YOU'RE A DOCTOR. That will be so great for so many mama's to hear! And yes to empathy and seeing the world in a more gentle light...the world needs more empathy. Thanks for a fantastic spotlight and for sharing your sweet Ella girl with us. Give everyone a hug from Auntie Miggy for me! (haha--Wink.)

Thanks everyone for all your love and support! I'm always so grateful for people reaching out and sharing their stories...there is so much tho learn from each other's experiences. So please 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 great weekend!

Tuesday, February 02, 2016

A Return to Hiking


Saturday we had crazy beautiful January weather. It was in the 60's for crying out loud. Obviously a hike was in order. More than just being excited for a warm day in winter, this hike felt especially exciting as it was the first time I've hiked since my herniated disk over a year ago. Hiking alone I'm sure I've could have handled many times, but hiking with our family means B wears Lamp on his back and I wear Zuzu on mine. And I did it! I hiked carrying Zuzu on my back and it was fantastic! It had been so long since I had Zuzu in the carrier that at first she was not having it. But after just a few feet, looking around and seeing her big sister in a carrier next to her, she loved it.

The hike itself wasn't very long or challenging, or even that amazing if we're being honest (most of it was a dirt path but since it was super muddy we only let the 2 little girls down on this boardwalk), but getting out in nature and being together as a family is as nourishing as the fresh air and movement of our legs. I grew up in a family that didn't do a lot of activities together--I don't want that for my kids. I've learned that the activity itself isn't nearly as important as the simple act of gathering as a family and sharing experiences together. Sure, maybe if you're surfers, hikers or campers that activity becomes part of your family identity, but I think that regardless of what you do it's really togetherness that becomes part of your family identity, which helps create your personal identity, as well as lasting family bonds. Ever since we hiked Arches as a family I had been excited about more hiking (and camping) but when my back situation happened, all of that stopped. And that wasn't the only thing that stopped--I stopped rigorous workouts, I avoided picking up my kids at all costs, even sitting in the care for more than a couple hours at a time was out of the question. But no more! I am happy to report that my back is no longer in constant pain. I can't tell you how great it feels to be pain-free and to live life without first worrying about my back! I gave an update a while ago on my back progress and particularly the role acupuncture played, but I have a new update and something I'd like to share with any fellow back-sufferers out there.




The quick run-down on my back:
--In November of 2014 (1 year 3 months ago) I started to have some lower back pain that in the course of a few hours went from mild back pain to a trip to the ER a couple days later because I was in such severe pain
--I'm talking CRAZY back pain that left me unable to walk (or take care of my kids in any capacity) for 2 weeks, second only to natural childbirth on my personal pain scale.
--Through medication and rest things got gradually better. About 6 weeks out I was about 85-90% better, but with that lingering 10-15% still causing me near constant pain. I assumed that in a few more weeks I would get back to 100%. (Wrong.)
 --I was constantly advised to be careful with my back so I backed off my regular work-out routine, (but started doing yoga 3-4 times a week) and I stopped picking up the kids, heavy groceries or anything that would strain my back. I even avoided sitting for long periods of time.
--Sometimes I would go a few days at a time feeling better, but never more than a few days.
--The following July I had a replapse that while not as bad as the first time, but I was again off my feet for about a week. This time I started to become more emotionally affected. Would I ever be pain-free again? Would I ever be able to work out and return to an active lifestyle? I was starting to feel hopeless.


After that relapse, I decided I needed to get more serious. So I started physical therapy and acupuncture. I honestly couldn't believe how well acupuncture helped--the first time I went I felt immediate relief! I kept going and even went when I didn't feel pain for the sake of maintenance. I was so relieved to finally have results and to feel relief from the pain that I even blogged about my experience with acupuncture here. I was sure I had finally found the answer. I figured that I would continue treatment for a while, but that eventually my appointments would be further and further apart until I no longer needed them. Unfortunately, one day I went to treatment and my back pain didn't go away. I tried to be relaxed about it, but this was definitely a source of stress and worry for me. I went the next time and it was a little helpful, but not much. 4 or 5 more trips later and sadly acupuncture suddenly wasn't working for me anymore.

In search of more answers one night I came across a couple books. The first was Healing Back Pain: The Mind Body Connection. No thanks, a little too new-agey and far fetched for me. The next was 8 Steps to a Pain Free Back--the focus of this book was all about posture and how we hold ourselves in our modern Western society and the incidence of back pain, vs the back pain incidence of our forefathers and even in current indigenous cultures today.

To make a long story short (too late), I ended up buying both, but it turns out that the first book--Healing Back Pain: The Mind Body Connection is what has really turned things around. Initially I was super skeptical, but it really makes a lot of sense to me...and it has made ALL the difference in the world, I would highly recommend it for anyone suffering chronic back pain. The book is not about how it's "all in your head" which would mean the pain isn't really there, your mind is just fabricating it. No, the pain is there and it's real, but the source of the pain isn't that there is something wrong with your musculoskeletal system, but rather the source of your pain is emotional stress. The author, Dr. Sarno, makes the comparison to ulcers. Ulcers are one of the few maladies that doctors will agree stem from an emotional issue (stress, worry), yet with most other maladies the medical community at large (Western medicine) is slow to attribute causes to an emotional issue. You really have to read the book (and some of it is a little repetitive) but honestly, just reading the book, addressing some of the causes of stress in my life and returning to normal physical activity (one of his recommendations) have been amazing. The book has over 1k reviews on Amazon and 4.5 stars. To be clear the author definitely recommends seeing a doctor if you have a incidence of severe back pain! (As do I!) But if you've been dealing with a chronic issue and nothing else has seemed to help, I really recommend this book. In all honestly I started feeling better even after reading just the first couple of chapters.

Like I said, at first I was hesitant...mind body connection? What's that? The thing is I am definitely someone who believes very strongly in the connection of our physical and emotional health, the spiritual and the physical even. I love yoga, I dig meditation (and need to do more of it) I believe our thoughts are the most powerful factors in determining who we are. But at the same time I also believe in Western medicine.  I've taken medication for postpartum depression and have no problems reaching for the Advil when I have an ache or pain. I assumed this book was going to cross some sort of line in my head about mind/body healing... I assumed (wrongly) that Dr. Sarno was going to suggest I use my mind to heal my back, like use meditation and visualization to push my disk back into place or something. But it's not like that at all...and really, what turned me around were all the reviews on Amazon. Like anything, I don't think it's a one-size-fits-all situation--somethings work for one person, they don't for another...but for me this was just the information I needed. I still have little twinges of pain from time to time, and have even had it jump from my lower-back to my neck (he actually talks about this happening) but overall this has been the best advice/prescription for my lower back. I could write about this for a while and go deeper into my experience, but I'm going to leave it at that... but if anyone has any questions for me about this I'd be happy to share more!


Anyone else ever dealt with chronic low back pain that didn't go away? Did anything finally work, are you still looking for something? What about the whole family togetherness thing? Did you grow up with a family that did or did not spend a lot of time together? How did that affect you? If you're a parent do you feel as strongly as I do about family togetherness regardless of what you're actually doing? (Although, doing things the kids enjoy should certainly be part of the plan or eventually they'll revolt!)

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.