Go see a movie

The worn upholstery on my movie theater seat was a little scratchy and half way through the really good movie, I let myself relax. I slumped down in my chair to lean far back and put my left foot up on the wooden arm rest of the row in front. I was on the aisle alone. My neck relaxed and my head rested. The smell was a tiny bit sweat and desperation that had been sitting for too many years. I was in Midtown by the Trader Joe’s.

I had been hoping to see this movie since I saw April recommend it on Facebook. It stars Shia LaBeouf and Zachary Gottsagen. I was just a tiny bit too old to think Shia was a heartthrob when he started in movies but I liked him as an actor. Zach has Down Syndrome. So of course, I was gaga over the previews for The Peanut Butter Falcon and it had actually gotten great reviews from the Disability community and film critics.

I ended up there on a Sunday at 4:30. I needed to get out. How does that need become so heavy and intense for me- a committed joyful dream of a mom? I feel this self driven pressure to never need to get away. To enjoy every iota of time with my children. But I get to a point when I need a bath or a new candle or a meal with a friend or an escape to tropical hotels with high thread count white sheets.

( I have written about this need before in The Bathtub.)

I may be extra needy, given that I still haven’t filled my prescription for the Zoloft. Being without my anti depressant brings back an old edge I am shamefully familiar with.

I had already cried once today, or was it twice.

I decided I just had to conquer the dusty air conditioner vent filter. And then with just 20 minutes before I had to be somewhere, I added an immediate need to windex the outside of the windows. Both of these jobs had formerly been completed by men. My dad always changed the filter and he would proudly grumble that no one had changed it since the last time he had visited. Chad was a phenomenal cleaner- he was fastidious about dirt. My picture window had been so dusty and dirty for so long that I started to worry that my succulents and plant babies couldn’t get enough sunlight. I was aware of Chad’s invisible disdain of my housecleaning. Every time he drove up in his new white midlife crisis on 4 wheels inner turmoil boiled. My imperfections were right there highlighted in my filthy picture window and I hate to be imperfect like a regular human. I have to fight my need to appear wondrous. I assumed his heart swelled knowing that I couldn’t keep the house like he did and the large square window was a beacon of my inadequacy.

I chose to attach two hoses together, squeeze between bushes and strain against my God given height to spray windex. Pressing my thumb over the brassy hose end I tackled years of dirt, abandoned wasp homes, spider webs and gunk. Maybe I could keep my white linen pants clean. I didn’t have time to run change into messy clothes. I was in a hurry. I needed to be at lunch with Mim for sushi with our old neighbors. The leaky green hose mixed with the dirt and crumpled leaves that lie under the Crepe Myrtle and made a sticky dark liquid that loved my pants. Due to the aforementioned height issue, my white pants were a tad too long and dragged in the fresh mud. I tip toed. I needed to unscrew the hose and return to it’s spot beside the building one door over from mine. I could either pick up the messy hose or drag it across the lawn. Neither worked. I was a mess. My dad has this amazing knack of showing up at this point in a project and finishing up for me. My dad had always cleaned up my painting messes, washing out the brushes and getting the garage floor speckle free.

Here I was rushing- burdened by a dirty hose and grief and sadness.

One more task- The vacuum semi-broke last week and I tried to revive it to pick up the ugly dust morsels that fell out of the AC filter. I was unsuccessful in this job, too. I swept up with a broom and let some tears flow. As I explained to BeBe why I was so tender and edgy, the ceiling light in the hallway started flickering dramatically and I balled- through my sobs I explained to BeBe that when people die they try to talk to their loved one through the electricity and Aubee wanted me to know how loved I am. Mim burst in to the hallway to investigate why her mama was crying. BeBe explained for me, that mama was emotional because Aubee was making the hall light blink. Mim saw him right away and confirmed that Aubee was here.

It wasn’t just the lack of Zoloft that had me in this state. It was resentment. Chad was not materializing. I had expected a Sunday with some parenting breaks. It was looking iffy. My crazy was brewing. The pot was stirring and there is nothing worse than thinking a break is in sight and then having it dissolve into nothing but an ugly puddle.

Oh- THE MOVIE. Sorry.

The Peanut Butter Falcon

Sooo, I’m sitting in the movie just crying away and renewed. Movies can do that for me. I can have my faith in humanity restored all by a pretend story. The actors wrapped me in their story of how Disability is not the defining feature of a person. The movie got it right. Disability adds more sugar to the pie. It doesn’t detract from a person’s personhood. I felt the truth that people would love Mimmy and already do because she is Mim. They see her. We even wear a t-shirt that says “See me” made by a family that advocates for people with Down Syndrome. Maybe that is what I am doing by writing this blog. Shining a light on what it is to be the divorced one, the mom of 6, the mom with kids going to college, the mom of a child with a disability, the mom of a child with an eating disorder, the mom who played the fool, a person who is learning to be a friend, a librarian, a person searching and finding life right inside her own home. I shine the light and write this blog.

I am uninterested in telling my story so that my friends and family from my old life know what happened. I assume they know what they want to know. They think what they want to think. They have already decided, I have revealed too much. Or not respected the privacy of my own family. I can’t listen to those that doubt and disapproval. I shine my light. This little light of mine, I’m gonna let it shine. This is my only gift. I allow myself to be vulnerable to show you that you are not alone in your own suffering. I am with you. Sometimes, on my best day, I am you. We are human together.

This might be why I often prefer being with people who have a disability. If I were to over generalize, a large segment of the population, I would say, many people with developmental disabilities are high on vulnerability and truth telling. I have that in common with people with disabilities. And then there are these other groups of humans that I can fit with. Moms who have experienced raising a child with a life threatening illness. We have reckoned with our own frailties and excepted the truth of the unknown and the beautiful and the horrible all mixing together. I work well with these far out groups of outliers.

Rarely in real life do the Shia LaBeouf’s or the Dakota Johnson’s of the world join the story of an outlier. But the idea is beautiful. Three people from different parts of society:

• Zach the guy with Down Syndrome with out family and left in a nursing home way too young. Little education and lots of gumption to become a wrestler.

• Shia a misunderstood criminal who accidentally killed his brother and needs a major do over in life. Little education and no lucky breaks

• And Dakota who is the nursing home social worker with her trim fashion and sweet femininity. Her schooling taught her what she knows.

These characters come together.

The scenery is beyond reassuring with that gorgeous Low Country light and tides with old live oaks hanging over dripping with Spanish moss. I’ve lived near where they filmed the movie and it is truly breathtaking. Rivals the coasts and any mountain, the way it changes everyday and life revolves around the tides. Felt so good to sit in that grungy movie theater seat and watch the scenery pass by and love grow.

So many parents with a child with a disability have to fear the options for their child as the child becomes an adult. This film is a tender view of the possibility of life beyond childhood for a person with a developmental disability. Life and society is changing for children with Down Syndrome. Mothers on Instagram and blogs are teaching us to celebrate their children with disabilities. But the adults with disabilities still feel mainly hidden from our celebrations of life to me. I am beyond lucky to have 5 siblings for Mim that will help her and I grow old with enviable choices.

This term “enviable choices” has begun to be used and heard by the disability community. I heard it at the TASH conference and I found it on the ACLD website. We can’t just have choices. We can’t just provide security and safety. We are prioritizing the goal of people with disabilities having enviable lives. We are beyond nursing homes and institutions. We are interested in supported living and person centered planning. This isn’t a Disneyworld for people with disabilities where they are kept in a bubble. This is life intwined with families and friends and lovers and independence. And the dignity of risk.

The Peanut Butter Falcon was a lesson in dignity of risk.

What is Dignity of Risk?

The phrase was first written about by Perske in 1972. He was referring to adults with developmental and or cognitive disabilities. By allowing adults to make their own choices and decisions involves some risk. What if they decide to eat twinkies for breakfast? What if they miss their train? What if they have unprotected sex? The flip side of the idea is coddling and protecting adults with disabilities so that they are safe. But safe can be boring and limiting and “deleterious” to a person’s self esteem and achievement.

Overprotection may appear on the surface to be kind, but it can be really evil. An oversupply can smother people emotionally, squeeze the life out of their hopes and expectations, and strip them of their dignity. Overprotection can keep people from becoming all they could become. Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try. Persons with special needs need these chances, too. Of course, we are talking about prudent risks. People should not be expected to blindly face challenges that, without a doubt, will explode in their faces. Knowing which chances are prudent and which are not – this is a new skill that needs to be acquired. On the other hand, a risk is really only when it is not known beforehand whether a person can succeed. The real world is not always safe, secure, and predictable, it does not always say “please,” “excuse me”, or “I’m sorry”. Every day we face the possibility of being thrown into situations where we will have to risk everything … In the past, we found clever ways to build avoidance of risk into the lives of persons living with disabilities. Now we must work equally hard to help find the proper amount of risk these people have the right to take. We have learned that there can be healthy development in risk taking and there can be crippling indignity in safety!

Robert Perske 1972 The Dignity of Risk and the mentally retarded

When I first decided to have Mim ride the big school bus, instead of having a special bus transport her, I was employing this idea. I advocated for Mim to be included. It was a bit stressful. She had to get on the bus for fourth and fifth grade as a kindergartener and then transfer buses at the fourth and fifth grade school and get on a new bus for her kindergarten. No other little kids were on her bus because she was being bussed one neighborhood away to be fully included all day in a class with one special ed teacher and one general ed teacher. The rest of the kindergarteners in our neighborhood went to our neighborhood school which did not choose to accommodate us. Actually, the principal of the neighborhood school wouldn’t even answer my phone calls or emails.

A trusted vice principal would meet Mim and help her with the transfer. She sat on the first seat of the bus in case she needed something. And it went well. She acted like a tiny celebrity at the transfer with the big kids. I allowed us to grow through the risk instead of protecting her because I felt it would be important as she got older that she could ride the same bus as everybody else and I also, wanted the schools to know that I was not accepting anything short of full inclusion. In the end, I doubt anyone cared but me about my statement. But here she is in fifth grade and she rides with her peers to her school where she is fully included. There are definite struggles and it isn’t all peachy but if I want Mim fully included as an adult on this planet then I had to start with the day she was born. In my view and it has been proven throughout recent history that a special bus today leads to a van in the future going nowhere and getting paid sub standard wages for useless repetitive work. I want a full life for Mim where she can have twinkies for breakfast, fall in love, take the Marta to get sushi downtown and pay for it with her own money, and make mistakes like we all do.

Zach in The Peanut Butter Falcon got to drink moonshine, learn how to swim, and fulfill his unrealistic dreams. I wouldn’t choose these risks for my child but it isn’t my choice, once she is an adult. It’s hers.