More bad news

This is what my bedside table currently looks like. In my living room there is a coffee table pulled up close to the couch that is similarly littered with lotions and heating pads and a back massager and all the rest of the detritus of the ill. My health is really bad. It’s been bad for a while now, but I was pushing through (because that’s what women do) so I could take care of Atticus.

Atti’s hip surgery came before I was even out of my recovery window for my own surgery. I lost our IVF babies while he was in the hospital. His needs have been so immediate that there was room for little else, especially paying attention to something new. But eventually I reached a point that I couldn’t ignore any longer. I had no energy. I hurt constantly. And I still have all the other nagging symptoms that could be anything but still make life difficult. I can’t go out in the heat or I’ll faint. I get dizzy and can’t feel my toes. I get tremors in my hands and legs. Spots in my vision that look like pieces of pepper swimming through the air. I can’t sleep and yet I’m so. so. so. tired.

Historically, whenever I have a new symptom that doesn’t make sense and isn’t enough of a problem to raise a fuss about, I just chalk it up to the endometriosis. Except this time I can’t do that because I just had a surgery by one of the foremost experts in the world. Endo should be in remission for a while and I still have these symptoms that make me as nonfunctional as I was in the worst days of my endo. I spent my 20’s disabled. I started this blog when I was disabled. I know non-functional, and that is where I am.

Luckily, I have a good doctor who knows how to treat pain. She knows I have a disabled kid and so she is always on the hunt for caretaker injuries. When I showed up with pain she sent me straight for x-rays which revealed that my neck is, clinically, jacked up. So then she ordered an MRI. And I asked her, while they were in there, if they would give my brain an MRI too.

The state of health care in America today means that every patient has to be their own advocate. I can’t go to the doctor every time a piece of pepper floats by my view, and even if I did she wouldn’t have the time to spend with me to figure out the source of every twinge. There were a few days a couple months ago where I felt like I was constantly swallowing my saliva. Like, I was struggling to keep up there was so much. I googled “excess saliva” and found that there were two options. 1) Pregnancy 2) Multiple Sclerosis. I did not turn out to be pregnant.

When I asked for the MRI on my brain my doctor asked why I’d want one, because she had to justify it to my insurance. I gave her my laundry list of stupid symptoms, told her the saliva story, and she shrugged and said she’d see if she could get it approved. Since I don’t know of anyone in my family that has MS, I figured I was just ruling out one more thing on this long search to find why my body acts so screwy. I didn’t really believe that I would actually have MS.

But I do.

The MRI came back with a 5mm spot on my brain.

My GP sent in a referral to a neurologist who will run a few more tests, confirm a diagnosis, and start a treatment protocol. She emphasized to me that there are really great treatments for MS and there is every reason to believe that I have healthy days ahead. In fact, my experiences with doctors tells me that I’m actually lucky things have gotten so bad because now they know what to do. When symptoms are just an annoying obstacle in your day they don’t care. But when things are bad, suddenly they pay attention. So in a way, it’s a good thing that I’m deteriorating so rapidly because it gives them something to measure. I just have to white knuckle it until October 4th when I meet with the neurologist and find out what our next steps are, but that’s still 3 weeks away, and I’ve been waiting for over a month. That’s a long time to stew.

I’ve broken the news to friends and family but I’ve been resistant to go public. I kept feeling like I needed the neurologist to tell me I really for real and true had MS before I said anything. I still do feel that to a degree, but I can’t really pretend that something isn’t happening here. It made me physically ill to think about spreading the news only to go to the neurologist and have her tell me that it was nothing. I guess having gone through so many years of being dismissed and mistreated over the endo, it’s in my head. I know how crucial it is to be seen as credible when you are trying to get health care, and anything that threatens to put me into the ‘psychosomatic’ category literally threatens the quality of care I receive. From doctors, sure, but even from friends and neighbors. When you are sick or disabled, you are constantly judged. And if someone judges you and finds you wanting, you don’t get support. Enough years of that will drive you crazy. So even when I had the MRI staring me in the eyes, even as those flecks of pepper floated past and my hand shook for minutes at a time, I was still afraid to claim it until the expert told me I could.

But now, I can’t afford to wait anymore. My friend Amberly has been living with us to help take care of Atticus and she had to sit me down and tell me how worried she was about my eating. For the last couple of weeks I’ve been eating about a cup of food a day. I wasn’t paying any attention to it, but she was, and it’s all because it’s so much damn work for me to chew and swallow. I’ve started falling down sometimes. I can’t sleep at night because the cramps in my legs are so bad. Atti hugs me and I have to try and hide my winces. I’m ready to admit what the MRI told me was true. I have Multiple Sclerosis.

I have another appointment with my doctor on Monday to address these issues and see if there’s something we can do until I meet with the neurologist. I am surrounded by wonderful people who are taking care of me and Atticus and I am in the best of hands. I will be OK. But first I have to accept that this is, in fact, where I am.

As I’ve been learning to accept this, there have been a lot of times when I’ve been afraid. Imagining the worst. Picturing my ability deteriorating permanently. And in those moments, knowing Atticus has been my salvation. If the worst happens, I’ll end up in a wheelchair. And I already know that that’s not terrible. Atticus is thrilled that we’re now “brain twins”, and I am grateful that I have his example of bravery and determination to get me through my worst moments.


We got a van!

Coverted Van
Meet Bertha. Big Blue Bertha if you’re feeling formal. She is finally, finally, after years of research and agencies and appointments and doctor referrals and funding negotiations and refusals and more meetings and two separate bids and test drives and waiting on forms and waiting on funding and waiting on more forms that weren’t filled out correctly the first time, and so much more waiting and red tape, she is ours.

This is actually the first new car I have ever owned in my life. And it’s the first car that is even in my name. I come from nothing and even the car that I lived in was a straight from the junkyard special with two kinds of paint and frame damage that made it so that if you opened the passenger side door you’d never get it closed again. For most of our married life we’ve made due with one car, or one car and something that had been passed through every one of Bear’s siblings. As our salary increased we’d get more recently used cars, but until this year we could only have made a new car work if we were willing to make major sacrifices and neither of us give a crap about cars, so we only cared about reliability.

But even once our finances stopped being so precarious, we couldn’t get a car that would suit Atti’s needs. The amount of work it takes to put in a lift or a ramp is mindboggling. The entire car needs to be changed to support the additional weight, seats and interior reconfigured, and that’s before you even get to the expense of the equipment itself. They are so expensive and they stay expensive because it is really really hard to find one on the used market. We’ve been making due with a van and my muscles.

Every time Atti has to go somewhere, I lift his lovable little 50 pound sack of potato self and put him in his car seat. Then I lift his equally heavy wheelchair into the back of the van. We drive to where we need to go, and then I lift the heavy wheelchair out of the back, bring it around to the side, lift him out of his wheelchair and get him all buckled in. Only after all that exercise do we get to actually run the errand we set out for. I don’t shop for fun. I never have days where I run errands. If I have to run two errands back to back that means I have to lift that damn wheelchair in or out of the car 8 times. If I buy something and it turns out to be wrong somehow, it usually just sits by the front door. Returns are more trouble than they’re worth. Amazon Prime is a gift sent straight from God.

But as I’ve thoroughly documented over the years, I am not a healthy person. I had major abdominal surgery in December. I have endometriosis and a host of other health problems and while I’m used to being in pain pretty much daily, the amount of pain I’ve been experiencing, when we just got the endo handled, has been alarming. I’ll write about this in more detail later, but I’ve gotten some new information about just how broken this dang body of mine is and one of the latest discoveries is that my neck is totally jacked. It’s so out of whack my spine is bent the wrong way. I bought a new bed, we changed my computer desk, and I’ve got some follow up to do, but carting a wheelchair around all the time was right at the top of the list for things to avoid if I want to keep from screaming.

LUCKILY! We were already well into the bureaucratic nightmare that is getting anything done with state agencies. So by the time we discovered my neck issue, I only had to wait about a month before the van was ready! And now here we are with my very first new car, with a ramp and special seatbelts, so I’ll almost never have to lift that wheelchair again.

We are so grateful to have such amazing people in Atti’s entourage to help us with this kind of thing. Until Betsy, our case worker at Alta Regional Center, we had no idea there were even agencies and vendors that would help us with this! We are overjoyed, and Atti is thrilled to be out of a booster seat and in charge of getting in and out of the car by himself. We are so lucky to live in California where programs like this exist and we have so much privilege to navigate those programs successfully. But even being white and native english speakers and upper class can only get you so far. I mention this not to be ungrateful, but because I want people who don’t have to navigate this world to know. There are so so many obstacles for the disabled that even all that privilege can’t get through it. For many people, buying a car is an exciting process. They dream about what kind of car they’ll get, what color, all the bells and whistles. For us, even with the agencies and programs that exist to help us, it is a ton of work. It took us nearly a year to get this van. We picked a make from a very short list of cars that would work. We picked a model and hoped for availability. Because we ended up working with a vendor that had a lot of resources we got the model we wanted but had to take the color they had on hand or pay for a different one to be shipped and pay a $1500 transportation fee. We decided the blue would be just fine.

We are so happy and so grateful, but it is never lost on me that this world is not built for people with disabilities. We are the lucky ones, with education and access and language and money to smooth the way, and the way is still so far from smooth.

But today was a win. So I’m going to try and ignore the bigotry and injustice that is a part of your life if you are disabled, I’m going to smile as Atti pushes his chair up that ramp, I’m going to strap him in, sit behind that wheel, and drive.


Being Brave

Atti started 3rd Grade last week. It’s a big jump into big kid territory, and he has to do it with a new teacher for the first time since Kindergarten. A new teacher who doesn’t know him and all the sensory things that poke his brain, who won’t understand that there is a powerful brain inside that uncompliant body, who might not share his goals and belief in his abilities. He has to start from scratch with getting someone to see him. And it’s scary.

We spent time talking about the changes that a new teacher might bring and we talked about ways we could help her understand. We thought up ways for him to be brave and perform for the teacher until she saw his smarts for herself. I sent her video clips of Atticus, I wrote a big email explaining Atti’s behaviors and goals and how ready we were to contribute. I read that email to Atti and he bounced on my lap and strangle hugged me, but until he got into the classroom, nothing was going to be settled for him. He was still terrified he was going to get another teacher who refused to teach him, or a professional who would once again tell him he was too intellectually disabled to learn.

The more I learn to speak Atti’s language, the more I appreciate in new and profound ways how the discrimination he experiences keeps him from progressing. Ableism is disabling. When you have trained experts telling you things about yourself, how are you not supposed to believe them? I struggle with this as a grown ass woman, how is a small boy supposed to dismiss the ignorance he faces every day? I’ve learned that my role as his mother is not just to drill therapy into him and expect that to get him to the peak of his abilities, it’s to help him see his abilities for himself and help him believe he can get there.

First Day
Atti asked me to drive him to school for his first day. We rolled into the classroom and Atti asked me to stay. I took a seat in the back of the classroom to let his teachers do their jobs and they reliably rallied around him to make him feel welcome and cared for. Ms. Baker had been waiting for him and came armed with Beatles music she put on just for him. They started by discussing the days of the week and Atti answered every question first until Ms. Baker brought the month flashcards over and he read every one to her. Despite his anxiety, despite how hard it is for him to perform, and how much work it takes to get the words out, he was going to show her what he could do.

It was time for me to go so I went to tell him and as soon as he saw my face he busted out “I love my school!”

It’s so hard when the resources are so limited. When the teachers have so much they are responsible for and so little reward. I’ve had many professionals suggest that I homeschool Atti to give him one on one attention. They’re not wrong, if I were a homeschool mom and taught him myself one on one he probably would be performing better according to one set of measurements. Unfortunately, I am not a homeschool mom and I know that that road would lead to sacrifices that would not be for either of our optimal health. And I have a considerable amount of working mom/disabled mom angst around that. But then I think about how much more there is to learn than addition and the alphabet.

This world is brutal for people with disabilities. I know that for myself. But my disability is invisible and when I can move through the world, I don’t have the additional barriers that Atti does. Curbs and broken sidewalks and stairs don’t tell me every day that I am not welcome in society. People don’t stare and point at me whenever I leave the house. I have never had a teacher tell me that they wouldn’t teach me because they couldn’t understand how I was expressing myself. These are experiences I would give anything to take away from my son, but I can’t. The best I can do is teach him how to operate in it. I can teach him to prepare himself for reactions. I can teach him to perform to his best ability until people cannot deny what he’s capable of. And I can teach him to be brave, give people a chance, and recognize that someone who plays you Beatles music is worth knowing.


Speaking Atticus

Speaking Atticus
Atticus does not speak fluently. Over the years we’ve been given every possible explanation for this. He’s mentally retarded, he has autism, he’ll grow into it, it’s just a CP thing. Almost always, like, so close to always that the distinction is negligible, the assumption has been that his speech is a result of his intellectual abilities. He’s had school psychologists tell us, with him on my lap, that we should be happy if he could make change one day. He’s had teachers who refused to teach him. He’s had family members talk about him like he’s not in the room or ask if he likes to watch the Simpsons because he likes the colors and not the biting social satire.

If he didn’t speak at all he would have been given a communication device by now. But he speaks enough that it often gets misinterpreted. Autism has come up a whole lot, which I would welcome if it was the appropriate diagnosis, but what they’re trying to call autism is really just him knowing that therapist doesn’t see him and saving himself the trouble. So it’s been up to me to crack the code of Atticus.

I knew him. I just knew that everything I was hearing from the professionals and their evaluations based on one hour of standardized testing was false. I knew that he was brilliant and creative. I knew that the fact that he could read at 3 meant something and wasn’t just a fluke. The school psychologist who called Atti mentally retarded told me that his reading skills weren’t authentic. They were rote. If he could read than so could a parrot. He didn’t see my boy. But I do.

And as I searched for proof of my belief, I discovered something amazing. Atticus was communicating volumes. You just had to speak his language to understand. So I stopped trying to make Atti speak my language, and I started trying to learn his. I realized that the phrases he repeated from his toys were not just idle games. He was using them contextually to speak to me. He was using them like a rapper samples music and surrounds it with a new context to make something meaningful in a whole new way.

He does not have an official diagnosis of speech aphasia. But it is crystal clear to me that that’s what is going on. He receives language perfectly, but struggles to express language. The words are trapped in his brain.

But the music isn’t. Music flows from him. And he uses the language of his toys because after playing with them so much for so long, he hears the music in them. When he uses those phrases, they come out with the same pitch, intonation, rhythm, as they come out of the toy. Because he’s singing them. Have you ever heard one piece of speech over and over and over again? When you’re rewinding an audiobook, or restarting a podcast, or trying to find the right starting point in your TV show to skip the commercials. If you hear one piece of recorded speech over and over and over again, it sounds like music. You pick up on the pitch and intonation and rhythm that you weren’t paying attention to when you thought it was just speech, and if you hear it enough, it becomes a song. That is the key to Atti’s communication. The speech section of his brain isn’t cooperating, but the music section is. And it is not just cooperating, it’s compensating.

Whenever I need Atti to say something – a response to a question he gets in public, or how to behave in his classroom – we find the music in the phrase. I teach it to him like a melody. And then he can say it.

But that only started to happen once he saw that it was worth the effort. He had to see that I was going to hear him. And for that to happen, I had to go to him first.

Think about how discouraging it would be if no one ever listened to you. If people only told you things about yourself that you knew weren’t true, but you couldn’t make them see. If you had to go through the world with the brain you have now, but a gag over your mouth. You could never correct misconceptions. You couldn’t tell a joke or share your personality. You could never prove anyone wrong. So you’d give up. You wouldn’t try to talk with your teachers because you’d believe you couldn’t change their thinking. You wouldn’t try to pass the psych tests because you’d believe they’d just tell you you were retarded again, so why even put yourself out there? Think about your own emotional life, and then think about how that would be impacted if you could never talk it out with someone who loved you?

I refused to let my boy stay there. Every time he gives me a chance, I snatch it up. When he tries to say something and I don’t understand, I tell him to keep trying, but first I tell him to keep giving me a chance. I make sure he knows that I know how hard he’s trying and that it’s me who needs to make up the deficit. I’m trying to enter his world because he spends all day every day trying to enter mine.


Father’s Day Sensation

I’m perpetually behind these days, but in case you didn’t see it, here’s my boys being famous. I have watched these commercials dozens of times because they legitimately make me that happy even if my own family wasn’t in it.


Finding Dory Review – from a kid who knows…

Finding Dory Reaction
I know it’s already been a couple weeks since Finding Dory opened in theaters, and by now, I bet most of the people who wanted to see it have seen it. But I still have a lot of feelings about it that I have to get out. This movie is IMPORTANT, y’all. And I need you to see the message clearly and teach it to your children.

Finding Nemo came out before I was a mom, so I didn’t pay it a ton of attention. I saw it like everyone, but I didn’t examine it.

Now that I have Atti, I’m suddenly aware in a whole new way that Nemo has a disability. Nemo has a “lucky fin” from a birth injury, and the whole movie is about him learning how much he’s capable of and his dad learning how to stop protecting him so much he can’t try. That’s a powerful and beautiful message for a kid like mine, and it’s one we believe. Early in his childhood we worked with a PT that drilled it into me: I had to let him fall. I had to remember that he wasn’t made of glass and that toddlers fall hundreds of times a day. That’s how they learn to use their bodies, and mine was no different. So that’s what we do. I smirk as other moms give me sideeye while I make my kid get out of his wheelchair by himself to play on the ground. When his wheelchair tips over and he falls on his face, the hardest part is dealing with other people’s reactions, not Atti’s. Between our family? We’re nailing the “let your kid do their thing” thing. It’s the rest of the world that makes that hard.

Finding Dory picks up immediately after the events of Finding Nemo, with Dory happily settled down with a reunited Nemo and his dad, when she realizes that she has no idea where her own family is, and her short term memory problems make finding them seem impossible. Dory is nothing if not optimistic, though, so instead of listening to the naysayers and the people who mock her for her disability, she sets off to find them, and of course, after going on a series of adventures, she does.

There are so many beautiful, tender, heart exploding moments in this movie. From my twin positions of someone living with disability and parenting a disabled kid, I could write a thesis about it. But what is most important to me about all of it, is how Atti reacted to it.

There are so few times in his life that he sees ANYONE like him on television as anything other than “The Magical Burden,” that seeing an athlete with an insulin pump on American Ninja Warrior has me dragging him out of bed to make him watch. Disabled people never get to win. They get to teach lessons and die.

But in this movie, not only do you have Dory with her short term memory problem, and Nemo with his lucky fin, you have a blind whale shark, a beluga whale with a head injury, and an octopus who lost a limb and seems to suffer from PTSD. This world is a brutal place for any disability, and each one comes with their own challenges and benefits. I LOVED LOVED LOVED getting to see an array of characters with diverse disabilities, including a bunch of cognitive disabilities, work together, discover their strengths, and be the heroes.

Because of Atti’s cerebral palsy, he doesn’t walk and uses a wheelchair. And that can be real tough. But he also has speech aphasia and struggles to communicate, and that is what causes the heartbreak. People treat him like he’s in a coma. As if he has the thinking skills of a beloved pet. He’s had teachers say to his face that he was retarded and that his reading skills were a fluke. He’s had family members, while he played at their feet, say that it was a shame he would never get married or ask if he liked watching The Simpsons for the colors.

But I know how to speak his language and I know just how much brilliance and insight and heart and bravery is in there, and I won’t rest until the whole world sees it. I will build paths of seashells across the whole of the internet until people see the magic in my kid is not a burden, but the joy of my life.

If you’ve never watched another video I’ve ever made, please watch this one. Show it to your kids. And tell them that there are so many people like Dory out there. And the world is lucky for it.


Year of Pleasures: Therapy Animal Collector Cards

Animal Therapy Cards

Atti had his hip surgery at Shriners Hospital here in Sacramento, and I thank my lucky stars every day we live so close to them. Shriners is the very best place to be for a kid like Atti, and they also do exceptional work for kids who have survived horrific burns, paying for many kids from developing nations to travel in and receive treatment.

Having a whole hospital geared to the needs of kids is such a tremendous gift for us. There’s a whole floor filled with toys and books and games, flooded with sunlight and pop music and art projects, each kid is greeted with a sack of presents, and my favorite, therapy animals make rounds.

This trip I learned that not only do therapy animals make rounds, but each therapy animal has a collectors card made up. So the kids can have a memento of the great visit they had.

In my utopian fantasies, teachers will be celebrities and instead of cards for professional athletes, kids will spend hours lovingly collecting and trading the cards of adorable service animals. That world would be so much happier.


Tresa gets a trainer


It’s been three solid years of torturing my body trying to have another kid. It’s been over eight years of hoping and trying and testing and measuring, but it’s been three years of hormones and needles and pills and surgeries and procedures and hospitals. It’s not quite over yet, we still have two frozen embryos we’ll be giving one last try before the end of the year, but that’s almost a formality at this point. We don’t expect a different result which means that I’m making peace with having only one child with needs that exempt him from the typical childhood experience. Not a single other part of my life has gone according to how the stories go, so parenting shouldn’t be much different.

I had my major surgery in December, and Atti had his in February. I was still in my recovery window when Atti became completely dependent and needed to be lifted – in a particular way that kept him immobile – several times a day. Which meant that I was carrying this 50 pound kid everywhere he needed to get without functioning ab muscles. It’s amazing my back held out for as long as it did.

But of course I got injured. Caregiver injuries are no joke and I can pretty much count on fighting back and muscle problems for the rest of my life. I have one friend who just had her spine fused because of damage done by improperly lifting her disabled daughter. But children are not free weights. There’s really no way to properly lift a free-spirited child. They work against your proper form.

I can’t blame it all on Atticus, though. My back was hurting me but what sent me into full spasm requiring muscle relaxers and my own immobility was my dumb butt trying to yoga my way out of the injury, but only yogaing my way into full blown seized up muscles. I suck at moderation.

Which makes my trainer even more perfect for me.

When I first started meeting him I was charmed by his hippie ways. He’s a little more open to the woo woo than I am, but I cannot argue with the results he gets. He does this thing called active meditation where he makes me work really hard and then stop and meditate and it works like magic to get me crying about pent up stuff every time. Unfortunately, since my surgery, I’ve been to bad off to use his full skills. Instead he comes over and does some energy work and some deep tissue massage. Somehow he still makes me cry just by pushing on the right spot. Last time he pushed on a spot in my abdomen and I let out a blue streak that would make a sailor who left the sea for the call of the open road and now worked as a longhaul trucker blush. I had to end the session by apologizing for my remarks about his mother.

Right now I can’t do much of anything. I walked a mile around the lake and it knocked me out for three days. I’ve had shin splints for weeks. My trainer has to keep begging me to listen to my body and stop pushing so hard, but I have no chill. I am regularly so bummed out about my current condition that I go right past where I know I should stop just because it’s so depressing that THAT is where I have to cry uncle.

I’m trying though. My trainer keeps promising me that a little bit is all it takes to make progress, so maybe by the time Atti is grown I’ll be fit.


Please Don’t See Me Before You

You Before Me
Me Before You is opening next weekend, and I’m begging you to ignore it. It’s a real shame because the actors are lovely and I’m sure everyone behind the production is good people, but this movie is dangerous.

Spoilers ahoy:
The beautiful man is a successful dude with everything going for him and then gets hit by a car and is paralyzed. He believes there is nothing for him but death, so his family helps him to work towards physician assisted suicide. Meanwhile, his parents hire a beautiful Manic Pixie Dream Girl to teach him how to live. But! TWIST! Instead of Manic Pixieing her way into his edification, he Magical Burden’s his way into hers. He kills himself anyway after teaching her how to reach for her dreams.

I am actually highly in favor of physician assisted suicide. I live with both mental illness and chronic pain. I understand that there is some pain that is both unrecoverable and unlivable. My problem is not that a man wanted to kill himself. If this was a documentary or a biopic or a film based on a memoir I would bring more nuance to this. But it’s not. It’s a fictionalized love story that relies solely on tropes that are harmful to humans. It sends a message that not having motor skills is to render a person a burden not worthy of life.

The character in this movie would rather be dead than disabled. I posted a link to this essay on my facebook wall and someone came back with their own experiences of facing a similar tragedy and wanting to die so as not to be a burden on their loved ones. People really do feel this way. They are out there and those are their real feelings, but what put those feelings there?

Society. Media. Every message we ever get that says we are only worth anything if we are thin enough or pretty enough or white enough or rich enough. Because all of society makes it so. It is internalized ableism. There are black people who hate black people, women who hate women, gay people who hate gay people. This is what happens when you live in a bigoted world and you are from an oppressed group. You get the same messages as everyone else, and some people believe them. People who would rather be dead than disabled believe the lie that they are a burden not worthy of life. This is what oppression looks like.

So here I am, trying to raise this beautiful brilliant boy. This boy who most days doesn’t want to leave the house because people look at him funny. Who has been invited to two birthday parties in his whole eight year old life. Who is constantly being ignored and talked down to, spoken about as if he’s not in the room while adults guess at what his future will look like. “He’ll be lucky if anyone ever marries him.” they say. Or “You should be happy if he can ever learn to make change.” Who has a handful of people in his life he can count on to treat him like a human being. And THE ONLY TIME he ever sees anyone like him in his entertainment, is when they exist to make other people around them be better people, and then they die.

I’ve written and spoken about this phenomenon, calling it the Magical Burden. (Based on Spike Lee’s idea of the Magical Negro).

Whether it’s Cuba Gooding Junior in Radio teaching a football coach how to feel or Walt Jr. in Breaking Bad giving his father motivation to get money, you won’t see a disabled character actually having their own story, and they’re almost never played by a character with a disability (Breaking Bad did get that part right). They are played by actors chasing prestige and Oscars. These characters only exist to teach lessons and give people without disabilities some perspective. And that perspective is always “It could be worse! You could have a disability!” In the case of this movie, the perspective is “Better live life to the fullest! You could get hit by a bus tomorrow and be crippled forever which is a fate literally worse than death!”

What I need you all to understand is that that attitude hurts my son.

It actually compounds disability. I’m trying to teach Atti to have faith in himself, in the world, that it’s all worth the effort required for him to engage. I’m trying to coax him out of his shell and keep him motivated and every time he turns around all he hears is “Why try? It’s better to be dead than disabled.”

Please think about that. Think about what that would do to you. If every message you got was that it was preferable to be dead than to live the way you live. How could you find the motivation to keep going? As an eight year old child? As a parent, how would you feel if you knew your most important job was to keep your child from believing in the worthlessness the whole world tries to sell him?

This movie is not about a man who wants to die with dignity and control his fate. It’s about a man who believes it’s better to be dead than disabled and a family who agrees with him. It’s about the ugliness in our society that believes self-sufficiency and contributions to the economy are the highest virtues a person can attain. That belittles the soul and the heart and the humanity of people who function differently from the norm.

Please don’t see this movie. Watch Atti on my YouTube channel as he fights to be seen. Watch Zach Anner or Becoming Bulletproof or Josh Blue. Make a friend who uses a wheelchair or crutches. Fight to make sure that all your spaces are accessible. Invite a kid who moves differently to a birthday party.

There is something worse than being disabled. It’s believing that the whole world only sees you as a burden. Do something to prove that’s not true.


The secret to quality healthcare


In December I had major abdominal surgery to treat my endometriosis. My stomach was expanded with air to a truly alarming size and then each of my internal organs was lasered clean. Including all whatever long feet of my intestines. You might imagine this kind of surgery would require a minute to rebound from, and you’d be right. Digesting is still a trick I haven’t remastered, and my abdominal muscles are shredded wheat.

And then just over a month later Atti had double hip reconstruction, rendering him completely immobile for 8 weeks. Getting him home was so horrible I was *thisclose* to laying down in the parking lot and waiting for a hospital van to run over me. Bathing, feeding, changing diapers, all had to be done without moving his hips. He was a 50 pound sack of potatoes that screamed when you carried him.

So with only shredded wheat abs to rely on, it was only a matter of time before I hurt my back. Luckily I managed to get through the worst of Atti’s recovery and now he’s back at school for most of the day, but for the past several weeks I’ve been doing everything I can to avoid anything heavier than my cats and trying not to scream every time I had to shift my weight.

I went to the doctor, bracing myself for another round of “Pat Tresa on the Head” as another invisible complaint rendered me unbelievable. But I had an entirely different experience. My doctor shot my back up with Lidocaine and then handed me a GIANT bottle of Tramadol since I refused her offer of Oxy.

All I have to do is mention that I’m taking care of a kid with cerebral palsy and the prescription pads come flying out. I have more drugs at my disposal than at any point in my entire career of sickness. There was one point when a gynecologist was prescribing me one pill at a time and insisted that he would not treat me until I went to a therapist. When I start giving my history to a GP, I can feel them pushing me off to the side the more I talk.

But now I know. All I have to do to get pain medication is not chalk it up to a lady disease.