Friday, January 13, 2017

Speechless on ABC- a definite much watch

I waited awhile to talk about the new comedy on ABC, which details the lives of an iconoclast family that includes among others, a teenage son, JJ, who happens to have cerebral palsy. The title "Speechless," comes from this particular character's inability to speak. More importantly however, it's also about how even if you are nonverbal you can still be heard loudly, and clearly.

This show hits on many issues that those of us who live in special needs families deal with on a daily basis. The season began with the mom fighting to get JJ the appropriate access and accommodations so he could attend the local public high school. There was the discussion about how moving into the richer neighborhood will get JJ a better education, and the family's other two typical children as well. But it brings to mind the fact that across the US, education is haphazard. While there is a basis in federal law, the IDEA, we know that every state can, and does, interpret the requirements differently.

In fact, at present there is a case before the Supreme Court to finally decide what does it mean by a free and appropriate education (FAPE). Some courts have held that FAPE means that the school needs to address a modest education, while others say all the districts have to do is address the medical or special needs of the child. The court seems to understand that each child needs more than a "modest" or basic education, but are at a loss on how to handle it, or pay for it. HERE However, one of the plaintiff's lawyers rightly points out that the law doesn't become dormant because of the cost of educating a special needs, or disabled individual.

Now we all know the anxiety that actually talking to the school about your child's needs can cause. Days, or even weeks, before yearly IEP meetings, we all lay in bed going over and over any scenario that we might have to argue about why our child may need, and in fact, are entitled to a particular support system.

Here is another one of my favorite scenes where the mom, Maya, played by Minnie Driver, is actually arguing with the principal of the high school about JJ's supports. But the funny thing, because after all it is a comedy, is that she doesn't let the principal get a word in edgewise. In fact, the mom plays both parts in the argument, argues both sides, much like we do when we argue with ourselves right before our children's yearly reviews. Of course, at the end of Maya's "argument" with the principal, the school concludes that JJ will get what he needs without question. The principal is so dumbfounded that she smiles sweetly and relents.

Sadly, we all know that, that is not the usual situation. You can argue till you turn blue, and many times the school districts will not do what your child needs in order to succeed. That is in fact why today's case before SCOTUS is so important. Hopefully they will set out a standard of care that every district has to follow when it comes to our children. And hopefully that standard will treat our children with respect as the fully capable students that they are, and not only allow the schools to see their disability, but demand that school see them as human beings first and disabled second.

But I simply loved how what Maya did was what I did for decades right before my sons' IEP meetings. In fact, today I even deal with issues, or quandaries, when we have to talk to people about their support and their rights. I will be driving in my car, and I will will be playing over and over in my head conversations, and arguing with myself out loud to the point that many times I get asked what is wrong? I laugh of course, because I know that I am simply being anxious. But I am also glad to know that I am not the only one who does this, or this parental idiosyncrasy wouldn't be portrayed so prominently in this comedy.

Meanwhile, what you see in this comedy is how the family handles one issue after another. And they do not neglect to show how the typical siblings handle JJs issues, or in fact how much time the parents need to give JJ instead of them. There is the resentment by the siblings, and then the guilt. In one episode JJ goes off with his aide, that of course the mom found not the school, to Disney, while the family has a day without JJ. The other kids want to go play paintball. Afterall, they don't do anything together in which JJ can't partake.

Well they go t paintball. They have fun. They are so excited to be able to do things like a "normal" family. But then they realize that what is normal for their family is just fine. Dylan (sister) and Ray (brother) are racked with guilt that they could have so much fun without JJ, and that at the time didn't even miss him. How the kids resolve who they are, and who their family happens to be is delightful.

But again, it is a real issue and real problems that typical siblings of special needs families deal with day in and day out. These children bear a lot of burden, and without a doubt are much older emotionally than their years would ever suggest. For information about how to support typical siblings in a special needs family start HERE or HERE. There are also psychologists, and programs such as Sibshop, that deal with the issues particular to these family situations.
 
There is also an episode where Ray during a family vacation has an appendicitis attack and the mom, is well prepared at the hospital. She not only knows every medical issue about him, but she has it filed, collated, color coded, and delineated as to what the doctors will find important. This is where Ray realizes, that his mom does not simply love and dote on JJ, but that she is on top of everything for everyone in the family and that without a doubt she loves Ray, too. He realizes that to his parents, and especially his mom, he is as important as his brother, and this actuality makes his day.

Now last nights episode, I think was one of the best. It showed how the family has to deal with, cajole, bargain,  and fight with the health insurance company to simply get JJ what he needs in order to function as a human being. For any of us who have had to deal with insurance companies, and the hours on the phone, plus the pushback, and the sheer distress of the red-tape, we know what it is like to know your child should be given X, and instead they deliver Y. Even in today's day and age, with Obamacare, and the ADA, our kids so often get the short end of the stick when it comes to services. So many of us live with the reality that if you can't afford it, and if the insurance company doesn't pay for it,  your child goes without, even if it is proven that a particular therapy or support program would make a difference in their lives and for their future. You cannot afford everything in life, and sometimes the choices are real, hard and distressful.

Another aspect of last nights episode was something that I find disability advocates talk about a lot.  They called it "inspiration porn." It states that disabled persons are not seen as human beings, but as one-dimensional characters only put on this Earth so able bodied people can feel good about themselves when they do the "humanitarian" thing and treat the disabled with respect. The show highlighted how so many of the able bodied only look at the disabled as a means to make themselves into better persons, instead of viewing the disabled as individuals in their own right.

An interesting segway in the show was how Kenneth, JJ's aide, who is African-American, pointed out Hollywood's use of the "magical negro" trope during a discussion about the cliches associated with the disabled. Kenneth explains that this character is usually represented as a folksy, barely literate character, with special magical powers or incite, that is used to help the white protagonist figure out the correct and noble answer to the film's perplexing issues, much like Hollywood tends to use disabled persons. On a funny note, the show ends, with Kenneth fading off into fairy land, with only his disembodied voice being heard,  basically an example of the plot device epitomized by the "magical negro."

It is a comedy afterall.

But the lessons for society are there.

Truth is, it is great to see what we deal with on so many levels in a such a lovely show. Everything is not dark, or traumatizing. Everything we deal with isn't depression. Yes we have bad days, but mostly we have good days. So many shows that have had a disabled character, like Parenthood, end up annoying. I did not like how autism, the autistic boy Max, the parents, or how so many of the issues were handled, and portrayed the longer Parenthood was on.

On the other hand, Speechless makes us laugh at ourselves. It takes issues that we deal with on a daily basis and turns the light on, in a funny enlightening manner. Just maybe, society is then being taught a valuable and effective lesson. That lives of special needs families are not sad, horrible, or depressing. Our lives are not something to be used as some sort of religious outgrowth. We are not to be pitied, or treated as the"other."

We are not here to teach, even though as I always say about autism awareness month, that every day is autism awareness day where the boys are concerned. You can't help it. They exist. They live their lives. So anyone dealing with them is getting a lesson in autism awareness whether these neurotypicals are aware of that or not.

Speechless shows that special needs families are here to live our lives with the same gusto, rights and joys as everyone other family. We are human and entitled to be a part of the world in which we live. But above all, this show teaches that our children are first and foremost human beings, not autistic, disabled, or special needs human beings, and the world is obligated to treat them with respect because they are human, and for no other reason at all.