Diary of an Autistic Father: Week 16

  Lola has now been in my life for more or less 4 months. She’s become a real fixture in my life. The new normal has been the new normal long enough to not be new. Yay. 

It’s been a peaceful week too. She’s just been eating and sleeping and playing. She hasn’t been sick. She’s been a bit fussy but she’s a baby. Fussy is her way. She sleeps through the night at least. 

It’s been so peaceful I’ve moved my anxiety to work which has been on the biggest upswing in a number of years. I’m doing a new section and loving it. There’s a ritual to that section that I find peaceful. I’m always checking off boxes. I can get that. 

Things are so good in my life I’m looking at moving on from therapy. That’s a major step. But it’s one I think I’m ready to do. 

The reason I’m ready is simple. I’m making major improvements in my handling of anxiety. And Lola helps that. Lola makes it impossible to feel truly worried about the future. Everything is scary sure. But cub is going to be there. I have to devote all I have to that one endgame: get her to adulthood. 

That’s the beauty of fatherhood. It removes all of your extraneous priorities. Lola is my answer to everything. She’s a good answer. 

Diary of an Autistic Father Week 15

Lola made it 15 minutes at story time this week before her fussing sent us home. This was my call to be clear. I didn’t want to cause a problem. She was hungry–she’s chugging now– and I had to do right for the others. We will try next week.

Learning these rules is part of the job. I don’t have a clear concept immediately of what I’m doing. I have to go through moments like these to crack what I need to do. I try to do the best I can and I err on the side of helping her. She is my critter after all. 

This has been a fun week. Lola is starting to make a lot more noise. She’s talking almost nonstop in the car. When she’s on her tummy she sings. The sound is indescribably cute. Just pure joy and life. 

She’s been a fairly good kid. I’m aware I’m lucky that my daughter is well behaved. She’s even slept through a few nights. This is actually worrying since she’s a bit on the thin side. She’s not lacking for food I stress. She just doesn’t eat much. She’s given food but quits hard. I’m still figuring that out too though. 

There’s a parallel with my job. I’m learning how to do a new section. When I wasn’t actually working on it, I built a simulator to work on in my spare time. I’m not great yet but I’m figuring it out slowly. With time I will crack it. 

Perhaps that’s how all things are. Trial and error is everything. It’s all about patience and not quitting. I’m going to work on that. 

A Modest Proposal Regarding Films About Disabilities

So it is that I come to this moment. 

We stand once more at the precipice of another season of prestige films. A number have already rolled out. Most have already played the major festivals. Only a few are unseen. This is the season when actors and studios make their push for “respect” and Oscar gold.

It is of course an era typically heavy in films about disability. A few are scheduled so far. The Accountant. Bleed For This. A few others of lower profiles. Inevitably these films receive strong pushes for their actors. After all Eddie Redmayne, Hillary Swank, Jamie Foxx, Dustin Hoffman, and many others have received Oscars for their work. Playing disabled is a sure fire way to earn praise for “how hard it was.” Stories about the lengths the actors went to fill the media. They’re to be applauded. 

I’m here to call all of this out once and for all and to make a simple proposal: stop going to these movies until the industry makes major changes to them. 

I’m completely serious. The time has come to quit rewarding an industry which exploits disability in its films without hiring disabled people and which portrays disability in a frequently loathsome light. Movies and tv treat disability as the ultimate painful obstacle which it takes courage for abled actors to imitate. They ignore that the disabled don’t consider themselves courageous. They’re just trying to live their lives like anybody else. 

It’s that last part in particular that bugs me to be clear. I’ve heard umpteen stories about the making of My Left Foot. I’ve heard almost nothing about the actual disease it depicts. We’re so impressed when “normal” people imitate “abnormal” lives yet we ignore the actual people. I’m kind of over all of this. 

 I’m over how film represents disability too. It’s almost always very white. There are exceptions but it’s seriously so white. It’s also very heterosexual and I’m not sure I’ve ever seen a disabled trans person in the media. And yes, I am a cishet white man. But I’m allowed to want my media to be accurate. 
But back to my main point. I’m calling for an end to these fawning profiles on these films. I’m calling for an end to is letting saccharine garbage off the hook because the actor “tried so hard.” I’m calling for an end to being impressed by easy tricks. Al Pacino in Scent of a Woman was a parlor trick. Compare that to his work in Donnie Bradco. I’d argue the latter (unrewarded) role was harder. I’m definitely saying don’t go. 

What do I demand instead? Greater authenticity. I want more disabled actors. And don’t say they’re not out there. They are! I want more movies where people with disabilities exist across the spectrum like in real life. I want infinitely less movies where characters’ lives are hell because they have a condition. And yeah I could go without seeing another movie where someone demands to die because they’re paralyzed. 

So yeah, I’m going to boycott these films. I feel strong about this. I’m tired of this being a thing I have to see. Film itself would be better for these changes I say. 

I close by stressing that I am not the person to listen to on this. I strongly recommend reading the Twitter feeds of @erabrand @maysoonzayid @dominickevans @DayAlMohamed  and the rest of the #filmdis community. These are the true experts. They will tell you exactly why this matters, why Hollywood is wrong, and why I am wrong. 

Diary of an Autistic Father: Week 14

  This was a good week for Lola Faye. 

She mostly spent her days relaxing and learning what colors are. I only went a couple of places with her on my days off. She had time to chill and watch the fan as she likes. 

Thursday brought a big moment. Lola went to her first story time at the library. It was a special experience for her and her daddy. We sang and I clapped her hands during the 45 minutes. She was awake the whole time. The older kids all thought she was super cute.

The big moment for me was beginning a habit for her. I want her to love the library like I do. We were on the very same floor I’ve spent many hours on as a younger man. I want her to feel as at home as I do there.

There was another similar moment. My friend Rob brought Lola a couple of awesome gifts: a Batgirl doll and a Chewbacca plush that talks. Lola is young yet. Her tastes won’t emerge for years. But of course I would love it if she shared my interests. It would be a blast for me. 

The thing is, I refuse to force her to be like me. She may be athletic. She’ll likely be into far more feminine interests than me. She may utterly reject my tastes. And that’s ok. She’s her own person. 

But that doesn’t mean I shouldn’t try. I love these things and I should show them to her. I’ll give her the chance. And in the case of the library I have a moral obligation to get her into it. A love of reading is a vital habit.

For now though, I’ll just let her have fun with the fan when we’re not out and about. 

Diary of an Autistic Father: Week 13

This was a fairly busy week for Lola. 

She went to the Mall on Thursday so daddy could walk her. She saw her grandmother, aunt, and cousin Monday. She then went to therapy with daddy on Tuesday. Not a slow week for a 3 month old.

Lola has been a bit frustrating this week I fear. She’s been very fussy. Much more than usual. A lot of this stems from her illness. She’s feeling better but still stuffy. It’s hard for cub. She cries a lot more. 

I admit I have a hard time when she gets fussy. I want to help but I can’t always succeed. I try every trick in my arsenal though. I feed her. I change her diaper. I rock her. I take her out. All of these techniques help but they can’t always work. 

What I’m having to learn is patience with her. I can’t get mad at her after all. She’s a baby. So instead I try to be calm and work with her. Yes, it means trying a lot of things. But I can help her. 

She makes it worth it too. She talks much more now. Her coos are giving me life. She’s laughing too. I can endure the cries for the joy every time. 

The Problem of Privilege

This is a brief entry but I have to get it out all the same.

Privilege is a thorny subject. Bringing it up tends to lead to a denial of it by all involved. Nobody ever wants to admit that they have it. After all, if they have privilege, they have to admit their position in life isn’t entirely due to their own merits. It means accepting that others are better than us and society is unfair, two ideas Americans can’t abide.

Despite the constant denials, privilege is of course real. That’s a fact I’ve thought about over the last few days in the aftermath of my essay on Steve Silberman. I pointed out in it that he has the privilege of being neurotypical which makes it more likely others will listen to him. I called this issue with the mass media and society at large out and I was right to do so. For this I gained quite a bit of attention which profoundly moved me.

However it was rightly pointed out to me by @Erabrand that I myself have privilege. After all others have tried to speak up on the media’s preference for NT translators instead of our own voices and they haven’t been heard like I have been. Others are dismissed as having a chip on their shoulder due to other master statuses such as gender or race. I’m lucky to fit the classifications society views as “right.”

She’s not wrong. I’m a cisgender, middle class white male with a college degree, a respectable job, and a family. I represent a positive face for autism so when I see something wrong, I’m coming at it from an almost purely autistic point of view. I can’t be questioned as having some other agenda. This isn’t my fault, of course. I have nothing to apologize for in my life and I won’t do that.

What it does mean is I have to be aware of how my standing affects my views. When others come from a perspective that isn’t mine, I can’t dismiss it because it’s not covalent with my life experiences. I have to understand that they come from their own reality and it deserves to be heard. That means that if I’m aware there are other voices worth hearing, I must amplify them. I have a platform I can use to boost others. It’s my moral duty to use it.

It’s perfectly okay to admit this and to help others. Doing so doesn’t undermine the validity of our arguments. After all, if our arguments are truly the best, wouldn’t we rather they were proven in a fair battlefield of thought? Admitting privilege and listening to others is at least a first step in that direction.