On any ordinary day, processing complex and emotional information can be confusing and challenging for my 27 year old daughter Samantha, who has autism.  But on the day she realized that some of her adult friends live in their own apartments because their parents are wealthier than we are, she began complaining it was unfair. Not once or twice, but periodically. How can I best answer her?

With the truth. Life IS unfair (especially these days). While some fortunate families have enough money to subsidize and support their adult children on the autistic spectrum in living independently in homes of their own, many others cannot afford such an expense. On the positive side, living at home allows Samantha greater freedom with her budget. We pay for food, clothing, and medical expenses; she has the privacy of her own room and bathroom. Samantha comes and goes as she pleases—not such a bad deal. I tell her that she is luckier than many, unluckier than some.

I also admit that it’s unfair that there are so few housing options for people like my daughter. Samantha needs some life skills support but does not belong in a group home. My daughter has worked long and hard to become independent. She deserves to take the next step forward in her adult life. But she needs to live somewhere in Manhattan—where she grew up, where she knows the subway and the streets like the back of her hand, where her friends and family live. But lots of people want safe and affordable housing in Manhattan, right? Finding affordable housing on this small, but expensive island is virtually impossible for a person living on disability.

Teaching Samantha to accept unfairness without melting down is no easy task.  For starters, I must model rationality and acceptance of unfair conditions myself. (Not an easy thing to do when I’m fuming!)  I admit to my daughter that I’m frustrated with the difficulty of finding appropriate housing, but that I’ll keep working on it, and I promise not to give up. Samantha knows she can count on me to never give up, because I never gave up on her or allowed her to give up on herself.

Recently, Samantha learned that two members of her theater group have been accepted into SAG and Actor’s Equity.  She’s happy for them, but asks: “Why can’t I be in one of these unions?

“Great question,” I answer honestly.

“I’ve been in two movies and a commercial. It’s NOT FAIR!”

She’s right.  It’s horribly, ridiculously and unbelievably unfair. SAG does not credit my daughter with co-starring in Keep the Change, which won the 2017 Tribeca Film Festival, earned her a Best Actress nomination, and has been screened all over the world. The film was honored both at the United Nations (where Samantha was on a panel for Autism Awareness Day) and at the New York Stock Exchange, where she rang the opening bell for April, autism awareness month. How can it be possible that she was honored at the UN and denied a SAG card for her co-starring performance in the same movie? Part of me is just as confused by the arbitrary cruelty of the SAG rules as Samantha is. Another part is a mother wolf who is seething inside, but must model being calm and rational. (!!) I give my daughter a simplified version of the explanation that was offered to me by the person who oversees SAG diversity.

“SAG has crazy rules,” I summarize. “Very low budget films like Keep the Change don’t count toward membership.”

Samantha looks puzzled and doesn’t understand, and honestly, neither do I. According to the head of Diversity at SAG, the rule is that ultra-low budget films allow new film makers to hire SAG actors below union wages, but give no credit whatsoever to non-union actors seeking SAG membership. Not only is this rule unfair, it makes no sense to me whatsoever. (Maybe I’m missing something that people in the field could explain?)

I admit to my daughter that I don’t understand SAG rules either. “We have to try to change these rules. It’s a work in progress.” I urge her to be patient and assure her I’ll work on change too.

But between you and me, I’m not feeling optimistic, nor am I patient. My SAG Diversity contact tried to console me by saying “it takes time to change the rules. Your daughter is leading the way.” I’m proud of the pioneering work Samantha and I have both done over the course of her live.  But I’m exhausted from pounding on closed doors and breaking glass ceilings,. I’m not content waiting until the SAG rules change tomorrow or next year. Does anyone out there know about a loophole that a truly deserving, hard-working, proven actor can slip through? Please contact me if you have any ideas.

 

 

 

 

 

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