Thursday, September 21, 2017

Special Needs Spotlight || JJ

**Hi guys! If you love This Little Miggy and the work I do here, including the Special Needs Spotlight series it would mean a lot to me if you would take a minute and like my FB page and Follow me on Instagram. And of course sharing these posts is always appreciated and one of the best ways you can support me. Thank you! XO Miggy**

Hello! My name is Kathy and I have the privilege of being JJ's mom. John, his Dad, and I have been married for almost 13 years. We have 4 daughters and 1 boy. Mallory (12), Sadie (10), Piper (8), and Molly (5) are the best big sister's to JJ (4). In 2013, we found out we were expecting twins. It was an exciting time but also a little nerve wracking. I have a history of miscarriages so I was put on light bed rest at 9 weeks along. Everything was going great until the twins were 19 weeks gestation. I went in for a visit with a Perinatologist (I was referred to him because of my advanced age (31) and history of miscarriages) and found out that Baby B no longer had a heart beat. John and I were devastated. Thankfully, the Dr told us that Baby A still looked amazing and there was no reason why we couldn't go full term. At 25 weeks gestation we had another visit with the Perinatologist. At that visit the Dr noticed that I did not have a lot of fluid around the baby. There are 3 reasons why this happens. Two of them affect the kidneys but after some looking the Dr ruled those out. The third reason is PPROM, preterm premature rupture of membranes. The Dr turned to my husband and I and told us that I was going to be living in the hospital until the baby is born. I had 2 hours to go home, pack, and get my 4 kiddos taken care of. Thankfully, my Mom lives a block away so she helped with the kiddos so John could still work while I lived in the hospital. Our goal was to keep the baby in me until 34 weeks. They would do blood tests and daily non-stress tests to monitor the baby. Our little guy had other plans. He was born at 27 weeks 5 days via emergency c-section. We were both septic with e-coli and he had severely underdeveloped lungs. He was given less than a 5% chance of survival because they can help with every issue he had but growing lung tissue. As you know he beat those odds but not without some lingering issues. At one week old he had a severe brain bleed that got into his brain tissue and caused severe brain damage. He had Grade 4 brain bleeds on both sides of his brain. Grade 4 is the worst you can have. When the Dr told us this he was so apologetic. Not because of what happened but because he couldn't tell us what to expect. Since it happened when he was so little his brain can still grow and find new ways to work. As he has gotten older the effects of his brain damage has shown itself. JJ is diagnosed as failure to thrive, which means he doesn't eat on his own. We feed him through a gastrostomy tube (g-tube). He also had cerebral palsy which, for him, mostly affects his legs. His brain isn't communicating with the muscles in his legs to move so he doesn't walk. JJ is also non-verbal but can answer yes or no questions. However, if he is in a mood then he won't answer at all. It is mostly a guessing game with him.

***************

Miggy: Welcome Kathy. Thank you so much for being here today and talking about your family, especially your son JJ. First, when did you find out about JJ's condition and do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Kathy: Our son, JJ, was 1 week old we were told that his life would be a little more challenging. We weren't told an official diagnosis because with brain damage it is a case by case diagnosis. I remember feeling concerned but not heartbroken. I remember the Dr asking my husband if I understood what he just told us because I was so calm. I kind of chuckled and told him that I understood but just 7 days ago they were telling me my son was going to die and here he is still alive but with some issues. I told him I could handle it because I still have my little baby. Those thoughts that I had then are the same that I have now. Especially since he is defying everything the Dr's told us he couldn't do. I love my son and am so thankful that he is still on this Earth with me. I am happy to take on his challenges because it is a part of who he is.


Miggy: Could you please educate us about JJ's condition and explain how his’s needs affect your day-to-day life?

Kathy: Cerebral palsy or CP is a lingering physical effect that is caused by damage to the brain. The way I see it is that the brain has some damage to it and it no longer communicates effectively to the muscles. It can effect hands, arms, legs, and core strength. For JJ, it effects his legs and core strength. He can't sit up on his own and doesn't use his legs. John and I can still carry him from the house to the car but any further and we use the wheelchair. JJ has amazing upper body strength so he Army crawls around the house. 

JJ is also diagnosed with failure to thrive. Since he was intubated for the first 4 months of his life he lost the instinct to suck. That means he does not eat anything by mouth. He has a g-tube and we feed him every 4 hours during the day. We have a feeding pump that we put a special kind of formula in and it slowly pushes the food into his stomach. During feeding times is when we give him his medicine as well. Our day-to-day life revolves around the clock. We need to make sure we feed him on time so it doesn't mess with his sleep schedule or school schedule. Anytime we go anywhere we need to make sure we have his wheelchair in the back of the van since we don't have a handicap van yet. If it happens to be around the time we need to feed him we need to make sure we have all the supplies. We tend to not go on many family outings especially to places that are not handicap accessible. This is the new normal for us and it works. I started a blog about our life so that our family and friends can be involved in our life since we don't get out much.

Tuesday, September 19, 2017

Easy Kid Craft Round Up

Last week Zuzu asked me to do a craft and immediately visions of a painted rock collection of zoo animals with popsicle stick cages, pipe cleaner flowers and paper mache boulders all bedazzled with gem stones and sequins came to mind. Not really, but I was definitely over complicating it. And the thing is, those over-the-top crafts are usually not what my kids have in mind either. They simply want to explore, create and use their imaginations.

Being an artist I always thought I'd love doing crafts with my kids. And I do. But there are plenty of things about crafting with my kids that hit my type A nerve and keep me from being more spontaneous. The mess, complicated supply lists, too much time and energy for minimal results. I mean don't you hate it when it takes you 20 minutes to get everything gathered, set up and ready and after 3 minutes your kids are like, OK. I'm done.

I like simplicity and ease, especially in execution and having all the supplies on hand. Naturally, this includes keeping a well stocked craft area, but I also mean using things that are common items we generally keep around the house.

So after Zuzu's request I got out a bottle of shaving cream, food coloring, and a muffin tin. We made shaving cream paint in about 2 minutes and she was memorized. When I told her she didn't have to use the brushes, but could use her hands instead it was like sensory Christmas morning. She was in heaven dipping her hands into mounds of colored shaving cream, squishing it between her fingers and rubbing it on the paper.
It was simple, it was easy and she had the best time. If you haven't yet tried shaving cream paint with your toddlers, give it a try.

I've rounded up a few other easy crafts that take almost no time and with supplies you definitely have on hand. (If you don't have these on hand you can easily add them to your grocery list.)

Microwave Puffy Paint--flour, baking soda, food coloring, salt, baggies

Melted Crayon Stained Glass Art and also here--crayons, wax paper, iron

Paper Plate Dream Catchers--paper plates, yarn, beads

Homemade Sidewalk Paint--cornstarch, water, food coloring

Potato Printing (I spy a certain feather sweet potato print)--potato + paint

Easy Homemade Play Dough or also here--flour, salt, oil, cream of tartar, food coloring


Any other super easy crafts or activities with you and your kids love?
SaveSave

Friday, September 15, 2017

Special Needs Spotlight || Harry

Our little family consists of myself (Sarah), my husband Carl, our nearly three year old Audrey and our Harry, who is one today! We live in Robertson, Australia, a small country village which we absolutely love. We love the village but most importantly we love the people who live here, we feel so blessed to be a part of this little community. My husband is just finishing his second apprenticeship in the electrical industry and I'm a primary school teacher. It is such a privilege to be able to share our story in this spotlight. 


***************

Miggy: Welcome Sarah! Thank you so much for sharing your story and your sweet family with us today. Can you take me back to the day you found Harry would have Down syndrome? Was it before birth, shortly after birth, or sometime after that? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?


Sarah: The first time we heard something was not right was the day after our 19 week scan. We had been for our scan and apart from a few small things that, looking back on now were actually significant, thought that it had all gone well. That was until the following day we had a call from my obstetrician. I remember that moment vividly. I had been hanging out some washing and came inside to find a missed call from our obstetrician. I immediately called her back and she told me that our scan had shown that our baby had heart and brain abnormalities and was missing it's left hand. That was the moment our world came crumbling down. She wanted to book us into see a specialist and have another more detailed scan the following day.

That was definitely the hardest day of my life and the many friends and family that came and gave us support on that day and the days that followed, cared for us in a way I will never forget. The scan the following day confirmed that our baby was missing it's left hand and from what the specialists could see it looked like our baby had a hole in its heart which was common in children with Down syndrome. But relief did come that day when we were told our babies brain was OK.

The weeks that followed involved more tests and scans and a rollercoaster of emotions of which I had never experienced. We were so relieved to be told that our baby didn't have a hole in his heart (which unfortunately after he was born they found otherwise). This gave us such hope that maybe our little one didn't have Down syndrome. So after doing the NIPT I felt like our world came crashing down all over again, being told that the results were positive for Down syndrome.

Those weeks were hard, so very hard. Looking back I feel like there was a time when I was there, but I wasn't really. Kind of like when your ears are blocked. I was there, I was present but everything was muffled. I didn't feel much other than numbness.

The thought of our child missing his hand was hard enough, but finding out that he also had Down syndrome, that was almost to much to bear.

I will be forever grateful to my Lord Jesus for sustaining me and helping me find joy where I didn't think it was possible.

Compare those feelings with how I feel now. What a stark contrast only a few months can make. As soon as I held Harry in my arms my worries started to dissolve and they have only continued to do so since.

Miggy: How do Harry's needs affect your day-to-day life?

Sarah: Harry has Down Syndrome and is missing his left hand. Neither of these things are related which is why it was hard to accept at first. Harry is much like any other baby. In fact, I would say he's probably easier than most babies. He has such an easy going personality, is always happy and content. Harry having Down syndrome does mean that he is a little slower in reaching his milestones and we do have quite a few therapy appointments to help him reach these milestones.

Monday, September 11, 2017

Flip Sequin Round Up

This Little Miggy || Flip Sequin Round Up

Are flip sequin shirts all the rage in your kids' school? They're a pretty hot ticket around here. If you don't know what flip sequin means (also known as reversible sequin and double sequin) it's a shirt where the sequins are one color or pattern on one side, and then you can move your hand across the sequins and flip them to the other side where they make another color or pattern. Like the dress below that says Be kind, actually is a slice of pizza when the sequins are flipped to the other side--ha! Middle school Miggy would have been so into these! (Unfortunately for her she was into mustard colored turtlenecks and paisley patterned vests at the time.)

We found a really cute flip sequin shirt for PSP back to school at Nordstrom (top picture--no longer available online) so I thought I'd do a quick round up of cute flip sequin shirts and a couple other flip sequin items spotted online. And while I didn't find her shirt availble online,  number 4 below is similar to the one we got PSP as they both say Hi and Bye. ;) Any other cute flip sequin stuff I'm missing?

This Little Miggy || Flip Sequin Round Up


1 / 2 / 3 / 4 / 5 / 6 / 7 / 8 / 9 / 10

Friday, September 08, 2017

Special Needs Spotlight || Jackie

Hello All! My name is Jacqueline Smith (not a Charlie's Angel!) I am 37, have a wonderful partner Von, and we live in a small town just outside of Cleveland, Ohio. I have 2 daughters, ages 12 & 16; Von also has 2 daughters ages 15 & 19 and they come to visit us two weekends a month. I also just so happen to have been born with a very rare muscle disease called Centronuclear Myopathy. It causes severe muscle weakness, scoliosis, pain, contractures, and breathing weakness. I use a power wheelchair and a ventilator to keep me going each day. I love life and thank God for every day I have been given. I try to have a positive attitude despite it being really hard to lose your independence as a mom. 


***************

Miggy: Hi Jackie and welcome! Thank you so much for sharing your story here on TLM today. Let's start at the beginning, how old were you when your parents first knew something wasn't quite "right" with you? How old were you when you started to notice you were different from other kids and how did that make you feel?


Jacqueline: When I was born I was what is known as a "floppy" baby. I had very low muscle tone, and a weak cry. As the months went on my parents knew something was very wrong because I was not hitting milestones like I should have been. When I was almost 3 years old my parents took me to the Cleveland Clinic where I had a muscle biopsy done and was formerly diagnosed. My parents have each shared with me how devastating it was to hear that there was no treatment or cure for my disease. Doctors back then didn't know as much about my disease back then. They thought I would have progressed quicker and been very weak by my teenage years. I was able to maintain decent strength until my 20s and then things just kept getting harder to do. I remember realizing I was very different from my peers in elementary school. Kids would ask me if I was "retarded" because I walked funny and couldn't participate in gym class. In the early '80s public schools really segregated the disabled kids, which made me feel so horrible. How could I possibly fit in with my peers when they kept me separated from them?


Miggy: I'd love to hear about your family life growing up. Were your parents supportive and if so, in what ways did they encourage and support you? Do you have siblings? If so how was your relationship to them growing up? Is there something your parents did really, really well for you as a child? Is there anything you wish they would have done differently?

Jacqueline: My family is the most supportive group I have ever met!! My Mom always treated me as though I was a perfectly "normal" child. She encouraged me to try anything that I was interested in, and let me do all the typical things a child would growing up, like driving and dating and getting a job. My Dad was a little more apprehensive when it came to letting me explore life. I feel like he was nervous for his only daughter, and that he really wanted to protect me and shelter me from being hurt. Together my parents were the perfect combo when it came to raising a special needs child. I have a younger brother and he simply rocks! We were very much a typical brother/sister duo in our younger years...arguing and picking on each other, many times with my Dad intervening when it would get physical. Once we hit our teenage years we became the best of friends. He went everywhere with me and helped me with everything I struggled with physically on a day-to-day basis.

Tuesday, August 29, 2017

Talking to your Children About Disability

This Little Miggy || Talking to your Kids About Disability
photo by Momoko Fritz

Our kids have started school in a new district this year and as part of that transition was making sure Lamp's new school would be willing to let someone come in and educate each of the classrooms about Lamp and her unique differences. We did this when she started pre-school and again in Kindergarten. I really hope teaching children about disability is something we can do every year. The difference between this year and past years is that I got to be the one to do these presentations to every class. It was an amazing experience. It was like turning on a light switch for these kids and I was thrilled to be the one to help turn that switch on.

The first day of school I went to Lamp's class and talked to them. (Lamp was not in the classroom, nor did she want to be in the classroom, but she did want me to come and talk to her class.) However, as we walked into school that morning she was a little nervous, as was I. Lots of kids staring, but no one smiling or introducing themselves. THEN, a little girl in her class walked up to her and said, "Hi, I'm Sally. I've heard a lot about you. I hear you can write with your feet."

BOOM BOOM DYNAMITE!
This Little Miggy || Talking to your Kids About Disability
Lamp smiled, I smiled and this little girl made Lamp feel immediately at ease, and she was a great example to the rest of the class. I then gave the presentation to Lamp's class and I watched that switch turn on in their brains. Oh, that's why she looks like that. Oh, that's why she drives a wheelchair. Oh, oh, oh! I believe her first day of school went well. For various reasons, I wasn't giving the talk to the other students in her school until the third day of school. So while the kids in her class knew about Lamp, the other kids in the school did not for the first 2 days.

This is how her second day of school went: On the second day of school when I went to pick her up, she said school was good and she was her normal, positive self. When we got home, however she made a sort of off the cuff comment and said, "Well there was one boy...and another boy...and then this girl...and this other girl..." She ended up telling me about 4 different kids who did everything from calling her a names to her face, to pointing and whispering about her within ear shot. 

That was just one day in a new (and small school) where at least 4 different kids who didn't know what to think or do, said and did hurtful and rude things. I'm sure these are great kids who come from great families. I'm sure their parents have even talked to them about being nice and treating other people with kindness. But in terms of disability it is simply not enough to tell kids to be nice and kind. Especially when their young and inexperienced minds have never encountered someone with differences before. They have questions! And concerns! And how's and why's and all sorts of stuff. It's really, really hard to remember to "be nice" when you're also trying to comprehend wheelchairs, limb differences, atypical movements or sounds, leg braces, walkers or any number of things that set our special needs kids apart. Which is why I appreciated the little girl Sally from day one because it was clear that her parents didn't just tell her to "be nice" they actually talked to her about Lamp and her differences.

Education is the key--the night and day difference--to our children treating their disabled peers with dignity, kindness and inclusion. 

Once again, after I gave my presentation to each and every class at Lamp's new school I saw those light bulbs go on, I saw--actually saw--on their faces and in their countenances the difference between knowing and not knowing. The difference between seeing Lamp as other, and seeing her as one of them. And that difference is everything.

In the past I've talked about How to Navigate a Special Needs Encounter with your child if you meet another child face to face with disabilities. This is a guide for having a talk with your child in private as a preemptive measure to meeting a person who is disabled. A lot of these points are the same, just presented in a slightly different manner.


How to Talk to your Child About People with Disabilities
This Little Miggy || Talking to your Kids About Disability

1) Everyone is different.
A great way to start this discussion is to talk about common differences like eye color, hair color and of course skin color and to point out that everyone is born just a little differently. Then you can bring in some slightly bigger differences like asking if they know of anyone who wears glasses (maybe they do!), or maybe you have a family member who uses a walker or a cane. Finally, you can say that some people are born with something called a disability. A disability is when your body or your mind is different from other people's bodies and minds. Having a disability isn't bad, sad, wrong or strange, it's just different. We often say, "Lamp was just born this way" and "This is how God made her." You can show them pictures of individuals who might look a little different than they look and teach them a little about some of these differences. You can show them Lamp who has limb differencesCatherine who has muscular dystrophyLily who has Down syndromeZayn who has dwarfism, Brenna who has Harlequin Ichthyosis,  Noah who has trisomy 8 and cerebral palsyElizabeth who has one legSarah who has Apert syndrome, cute little Ruby and many, many more.

This is also a great time to explain that some differences we can see on the outside, but some differences are on the inside and we can't see them. Like Cole who has epilepsyLuke who is autistic,   or Wyatt who has severe food allergies and again, many, many more.

Of course not everyone who is disabled is "born that way." Disability can happen through accidents, illness and other factors as well. It's up to you how deep you want to go into this discussion. For a first time conversation I try to keep it basic.
This Little Miggy || Talking to your Kids About Disability
2) Questions are OK, as Long as You're Kind
The emotions that a child feels when seeing or meeting another child or person with special needs can range from curious, to nervous, to scared, to just plain confused. Let your child know that if they have a question about a person who is different than them, it's OK and to come talk to you or another trusted adult about their questions.

While it's important not to shame kids for their curiosity, it's also very important to let children know in no uncertain terms that certain things are not OK. It's not OK to use rude words like gross, weird, creepy, etc. Even if your child does this innocently--"she's weird!" "Yuck! Why does her arm look like that?"--please correct them. For example, "That's not a nice word and that might hurt her feelings" or "that would really hurt your feelings if someone laughed at you." or "She's different than you, but she's not weird." Of course it is also not OK to point, stare, laugh, call names, make fun of or tease a person with a disability. These boundaries must be laid out for kids. Curiosity can quickly turn to cruelty if left in a vacuum of ignorance and if we don't teach them through our words and actions exactly how we treat other people.

3) Find Common Ground
Once your child has some understanding that some people are just born differently now is a great time to find some common ground.  You can point out that children with disabilities like to do the same things that other kids like to do--they like to play with toys, watch Disney shows, eat ice cream, etc. Establishing this sameness is KEY. This is when the light goes on and children realize, oh... she's just another kid, like me. We are more alike than different!
This Little Miggy || Talking to your Kids About Disability

4) People with disabilities are Differently-abled
As Lamp's mom I try to emphasize that she is DIFFERENTLY-abled. Yes there are some things she can't do, like walking which is why she drives a power chair, but wow, she can drive a chair! Or I always tell them, she might not be able to do somethings you can do but guess what? Lamp can write with her feet! This is when you see the jaws drop--literally. Again, it's super important for kids to understand from a young age that disabled really means differently-abled. Try to help your child see a disabled person's strengths. Here are a few great videos illustrating this point.

The 2016 Paralympics Promo Video is an amazing demonstration of differently-abled. Also love this one from 2012.

Of course it's also important that we don't play into the victim/hero stereotype of disability and insist that a disabled person has to "overcome" their disabilities and be some sort of "superhuman" to borrow a phrase from the Paralympics. People with disabilities are also just regular people and accomplish a lot of things that regular people do. You could show your kids that children with Down syndrome go to college too, teach preschool, and that people without arms have regular jobs like Richie Parker of NASCAR or Jessica Cox who is a pilot. The point is we all have strengths and weaknesses, and people with disabilities are no different.
This Little Miggy || Talking to your Kids About Disability
5) Encourage your child to build a genuine friendship with their differently-abled peers.
Building an actual friendship is much more than just waving hi, "helping" a child with a disability at recess or even sitting by them at lunch occasionally. And it is certainly more than inviting a disabled peer to prom--inviting a disabled classmate to prom shouldn't be newsworthy or remarkable. Kids with disabilities are as multifaceted as any person and deserve real, loving, deep, messy, funny, relationships. I love that kids want to be kind to Lamp, but none of us want a world of people who simply say hi to us, but never invite us over to play, or ask us questions about ourselves, or make silly faces to each other when the teacher isn't looking. Invite our kids to parties even when you're not sure it's logistically feasible, set up play dates and allow for the real ups and downs of friendship. True inclusion is true friendship.

Thank you so much for taking the time to read this. And thank you even more for hopefully taking the time to have this conversation with your kids about disability in general and their differently-abled peers specifically. Please let me know if you have any questions or comments below. Once again keep in mind that I don't have all the answers and I don't speak for the entire disability community. But this is my basic outline and I have seen it work wonders and I hope it will do the same for you. 

XO, 
Miggy

Friday, August 25, 2017

Special Needs Spotlight || Lisa

Hello lovely readers! I live in an old brick bungalow in Salt Lake City, UT, with my handsome ride-or-die husband and anxious rescue dog. My husband has three grown kids, and we recently fostered a boy from Ukraine. I’m working on finishing a PhD in English Literature this year, and am itching for a regular 9-5 job outside of academia! I grew up in Sweden, and that’s where most of my family still live, but spent years in Sudan, Africa, as a teenager and went to college in England, and eventually ended up in the US of A for graduate school. I’m so honored to participate in this interview, and share some of my perspectives on disability. If you are not sick of me after these rather wordy responses, you can find me on instagram @lisamarietheswede.

***************

Miggy: Hi Lisa! Thank you so much for being here today. As much as I love hearing from families and their journey in becoming a special needs family, I also love hearing from individuals with disabilities who can talk about being an individual with a disability. Can you take me back to the beginning? Were you born with a disability or was it something that happened a little later?


Lisa: I was born with spina bifida-- a fancy Latin term for a disability that basically means my backbone didn’t close completely over my spinal cord in the womb, and everything below that ruptured point on my spine was consequently affected and a little bit weakened. My disability was a surprise to my parents and, therefore, I think quite terrifying news initially, as they didn’t know what the diagnosis would mean for my life or for theirs.

Back in the 80’s, when I was born, there was only really one ultrasound during the pregnancy, and my adventurous mother was blissfully round and happily gallivanting in Turkey for that scheduled appointment and completely missed it! In addition, my parents’ had my older sister, their first born, two years earlier, while working and living in rural Rwanda, and her dramatic delivery involved an announcement on the local radio that the “white woman” was going into labor and my father crossing a national border at breakneck speed on a motorbike in order make it in time and a lizard slowly scaling the wall of the primitive hospital room where my mother pushed and pushed. So when it was my turn, and my parents were back in Sweden, with all the latest medical advancements and a reliable socialist healthcare system available to them, they did not anticipate any complications. But there I was, not what anyone was expecting, demanding that they adjust their lifestyle, living arrangements and understanding of what counts as a “healthy baby.” My father always tells the story of how I came out and the doctor’s face changed and suddenly the room was full of white coats and tense debate and hushed speculation. He had to sit down. Exams and surgeries followed, and a long hospital stay, and, eventually, an encouraging verdict from a sensible medical expert that I wouldn’t exactly grow up to be a ballerina but that there was no reason I couldn’t do everything I set out to do, at which my dad sighed with relief, having never cared for the ballet.

My sense, based on my subjective reconstruction of the past and my parents’ memories that I internalized as my own origin story, is that there were a lot of “what ifs” and questions and uncertainties but that I was unequivocally loved from the beginning and excitedly welcomed.
That said, I know one of my mother’s most vivid memories attached to my tumultuous arrival is a nurse in the hallway expressing that it was a shame a proper prenatal screening had not been performed, because then my mother would have known beforehand, and could have “gotten rid of it." It broke my mother’s heart that the same birth that filled her with maternal pride and joy, now the mother of two babies (twice as many babies as the day before!), inspired pity in a bystander. I mention this passing remark fully aware that the recent American CBS report on Iceland’s DS rates has sparked heated responses and a renewed media interest in selective abortion, but I want to emphasize that denying the quality of life or worth of people with disabilities (physical or intellectual) is nothing new, and many northern European countries have similar statistics and have had them for a long time. And, in a larger sense, beyond the prenatal technologies we rely on today, there is of course a long brutal global history of systematically removing, sterilizing and institutionalizing individuals with disabilities. I think of that nurse’s offhand comment as also illustrating how ableism [the prejudice and social discrimination of people with disabilities], in all its structural and varied manifestations, is brought to bear on even the earliest moments of a disabled life.

Because abortion is such a hot-button partisan issue in the U.S., many activists normally committed to an intersectional feminism that includes disability justice seem to have fallen silent. The conversation has largely been hijacked by a particular group of white-haired pro-lifers wielding divisive and shaming rhetoric that shuts down healthy debate and excludes contrary positions rather than invite diverse voices to the table. I am eager for this conversation about bioethics and disability and the supposed “prevention of suffering” to be afforded the same space and serious attention as other important conversations about the rights of other minorities, and for that conversation to be spearheaded by people actually in the disability community since they are the ones whose lives and bodies are being verbally bandied about. All this to say that, throughout my conscious life, as I was growing up and into my particular body, I carried the sense that my existence, and the way I live in this world, is political in and of itself, and always has been. I think in a way those of us with a body deemed a-typical or dis-abled or ab-normal offer the world a gift by simply continuing to go on furiously living, by unapologetically insisting on our manner of being alive and the contradictions and possibilities inhabiting our corporeality.