On Words: Normal

One thing you get used to, when you are a member of a family that has a child, or an adult, with special needs, is that your normal isn’t the norm. Now of course we, in the special needs community, also like to say “there is no such thing as normal,” but in so many ways, I think we really are simply trying to hold onto that vestige in our world that includes the white picket fence, 2.3 children and the golden retriever (or the rescue pet from the ASPCA, or any number of fine organizations).

HERE is my discussion of what normal means.

HERE is how that definition of normal can hurt your heart.

You are raised with a dream. That dream includes a nice home, happy marriage, healthy children, a satisfying job, a yearly vacation to some place nice, good food, nice clothes, and above all good health. We are raised on Disney, that there is a prince out there for everyone, and one day he, or she, will come swooping down into your world and make sure your problems go away.

Honestly, as you begin your journey into the world of marriage and creating a family, does anyone think that their marriage might not work out, or that your children will have life long and profound issues. And yes, bad things happen to good people and to people who do not deserve it. But no one hopes for the negative in life. And yes I know that many “advocates,” and I use that word loosely, will say that I am hateful right now for how I perceive issues surrounding disabilities, but dealing with realities beyond the norm adds a stress on life that is negative, sometimes frightening, and many times overwhelming. It is ok to admit it. It is not ok, to do nothing about challenging the norm, making your loved ones lives better, and fighting tooth-and-nail when issues arise that especially dehumanizes those you love. THAT.IS.THE.DIFFERENCE.

Meanwhile, we take our cues in life from what is perceived to be normal. And yes, I think its ok, and quite frankly part of human nature, to be jealous of those whose life appears normal. Just the regular typical issues that a family is supposed to face. However, it’s not ok, to be jealous to the point that you are an asshat, or think you are entitled to be cruel, mean, or devoid of respect for others because of your situation. It is important to maintain a sense of humanity, and equilibrium.  The only way you can really do that is to be happy for those who lead seemingly typical lives. Because how you deal with other people, the challenges you face, and the fights you need to fight, says more about you as a human being and delineates how successful your children will be in their own lives.

Being jealous, what we used to call, keeping up with the Joneses, is not pretty. It is not pretty when you resent someone having a bigger house or a bigger car. It is not pretty when you resent that someone else’s child doesn’t have a disability. Life is not fair. Life is random. That is simply how it is. While, we like to believe in karma (I for one, am a big hoper that there is such a thing as karma), too many evil people live long, healthy, lives that they denied to others, for karma to be real. Ok, so the idea is that karma happens in the afterlife, or the Christian concept of hell.

On the other hand, being Jewish it really is about the here and now. Of course, Jews also say that the punishment a person gets for being evil is to be remembered as evil. Well that quite frankly just doesn’t cut it. Sorry. Even though I’m Jewish that just doesn’t satisfy my “evil people need to be punished” gene. The only ones that seem to be hurt in this situation are the innocent relatives who come after the evil person has expired. Having those who did not commit the crime carry the burden of what someone else did just doesn’t seem like justice to me. And if they think the idea is that a person will not do evil because they do not want to pass down such a legacy, ignores what we truly understand about the sociopathic mind.

Meanwhile, normalcy and jealousy seem to always go hand-in-hand. I am not certain if that is a motivator for work, and success or that some people are simply driven to have bigger and better things than someone else, but the reality is that without these two quotients much of the world’s success may not even exist. Listen, even in fields like cancer research there is jealousy. The first person to find the special cell, or the first person to find the way to change a disease, will receive accolades. That is what people seek, besides the cure.

So is needing to be normal part of human nature? We all wanted to belong in middle school. We all want to belong to society  even as adults. To have human interactions, to fit in to some extent. We want to be seen as productive and important in some way. So the way we do that is to be normal. To act normal. Talk normal. Have normal ambitions, and desires. To abide by the rules set out in society that make society function.

But one of the things, we need to realize, as a normal society, is that there are those in our world, that have much to offer that are outside the normal channel of offerings. That they may need a little more help, and they may need a little more care. That persons who do not fit the mold, and I am not talking about the artsy archetype, I am talking about persons with disabilities, have much to offer without being “normal.” Society needs to realize that these persons have extraordinary talent, grace and heart and have much to add to the world as those who meet the definition of societal norm. They may simply go about it in a different way. And that should be ok. But unfortunately, yet it isn’t seen that way.

While society, at least here in the American first world, seems to understand the rights of those with disabilities to be educated and to be included in school, our society as yet, doesn’t seem to be able to see beyond that. Yes, while there are work programs that normal society pats itself on the back for creating for autistic individuals or physically disabled individuals, they do it less with the disabled person in mind and more for the accolades they want to engender, or the tax breaks their company can receive.

The programs vary of course. But what if  you do not fit the mold that the “normies” have set out in these programs. What if you are neither fish nor fowl, as the disability director would say abut my sons. Intelligent to a fault, but with many other issues, that could stand in their way. In fact,  that is the reality of so many on the autism spectrum. The idea that a “high functioning” autistic doesn’t need support for social or emotional or sensory issues is absurd. And as we all know, when you meet one autistic person, you have met only one autistic person. Even scientific research has proven this.

Typical brains are wired basically all the same. But every autistic brain is wired differently. Hence, the need to deal with each autistic individual separately. Support them in the ways they need to be supported, not with an across the board program. Create individualized programs for work as well as school. And this is where the modern work program for autistics fails. But then again, they were created and run by normies, who as one of them told me, has a nephew with autism so she knows what she is doing. (Don’t you just love it when people say that condescending bullshit to you…) And no, my son did not even apply for that program.

So I suppose this is the next step in dealing with normal. Teaching the normals that autistic individuals are individuals, and that they cannot lump them into one pot and expect the same result every time. That simply because something makes sense in the “normal” world, it doesn’t mean it makes sense in the autistic or disabled world. That maybe, just maybe, if corporations and companies really want a meaningful program to hire those with disabilities, they need to ask the disabled people first what THEY need right from the start. Radical, yes. But oh so respectful of the agency of the person involved, yet oh so not normal for companies to care about an individual’s humanity .




About Elise "Ronan"

#JewishandProud ...
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