Do you know how the smallest things can touch a huge nerve? I read this rather short post on a blog that I enjoy. An observant Reform Rabbi, Frume Sarah, writes it. I do not know if she likes what I write (don't know if she has ever even paid a visit here) but I definitely like what she writes. Anyway, I left a comment to one of her posts, of course (anyone who knows me knows I generally have a lot to say) and she answered and now I wrote a reply. But once again it started me thinking about just who we are and who gets to define who we are.
As anyone who has followed me for awhile knows, I have gotten into blogging blows with many in the neurodiverity world because of my refusal to define my children by their autism. So this is not a new issue for me. But I think there is even more to it than neurodiversity or what defines you as a Jew or a Christian or a Moslem or an atheist/agnostic or as an American. I truly think it comes down to your own integrity and what you as a person feel is important in your life.
I also think that in trying to define yourself, it ends up being a huge fight against some rather large entrenched organizations that think that they have the authority to denote and delineate what constitutes being a member of their group. OK, most groups do tend to define themselves, but who is to say that you cannot deviate from the norm and still remain a member of the tribe?(Believe in entitlements you can be a republican-there happen to be many compassionate conservatives or be pro-life and be a democrat -have news too, there are quite a number of those as well). Its almost as if we are all back in middle school and the cool kids are deciding what constitutes which clique. Are we so afraid of standing on our own that we need to still have the approval of the “cool kids” when go out into the world?
Or perhaps it is society’s need to compartmentalize everyone and everything. I know that personally I have never fit into any category and I know the boys never had as well. We were definitely never the cool kids; not me, hubby or the boys…HSB even said that he wasn’t looking forward to his senior year because he was not a school celebrity, you know an athlete. The disability director at the high school used to say that collegeman was neither fish nor fowl…he fits in nowhere. Well none of us fit a mold in my household and I suppose we never will.
So is that what the reality happens to be? Do we fit in nowhere? I have generally lived apart in many respects from society as a whole. I did not have the typical childhood, where you were raised in the city of your birth with lifelong friends from nursery school. My father’s job in Jewish philanthropy had us moving quite a lot. It was a good way to grow up. I saw a lot of the USA and interacted with a lot of people from many walks of life, but there was never the group or childhood clique to belong to. You would never believe that I was a varsity cheerleader, national honor society and model UN member (Yes, I know it is rather humorous considering my politics now if you think about that). I should have been very popular, but I was anything but. In fact I spent my teenage years alone.You would think that that was ridiculous considering most of my peers at the time thought I had lived that teenage dream.
For hubby it wasn’t much different. While as a boy he did have friends and was a track star, there weren’t the parties or the hoopla surrounding his adventure through school. Luckily we did find each other in college. I tend to think that it is those shared experiences of being on the outs, when everyone thought we were on the inside that gave us something additional to identify in each other.
The boys of course were never in the cliques, any clique as a matter of fact. Collegeman never even had a single friend. As I have written before, children would get up from the lunch table when he would come to eat. His alienation and rejection did lead to a form of PTSD and it took years of therapy for him to open up to the idea that peers really could be nice to him. Luckily HSB never experienced too much peer rejection. In fact I would say that in many ways what he has dealt with is generally typical childhood issues: loosing a best friend to another group of kids, having issues with peers-basically who can be the bigger jerk (15 year old boy stupidity) and the recent bullying which was squelched quite well by the administration at the school. He is lucky. In fact, luckily he doesn’t even understand how lucky he is.
As adults hubby and I never belonged to groups or cliques. Honestly, I tried it on many occasions, joining a gym, working in the PTA, even volunteering at my Temple (where we no longer belong). Hubby volunteers in town and even joined extra-committees at his old law firm. I have to tell you that when someone told me once that I was one of the PTA mavens in town I nearly fell off my chair. WTF, was my reaction. It is funny how people tend to see you in a different light than you see yourself. They imbue within you something perhaps that they want for themselves so they think that you have accomplished their goal. They think you get to run the show and tell the school where to place your child and who their teachers could be (there are a lot of people in my town with major control issues)…again this family is generally a unit unto ourselves, no cliques, no games, no groups…just hubby, the boys and me. Oh yeah and the three dogs.
I guess the point that I am trying to make is looking to find the answer to the question: why do we need to be defined by a group and why do we need to belong to any one group? I know who I am internally. I know what I believe. I know that I have a good handle on right and wrong and empathy and compassion and that I taught these same ideals to the boys. I know that I do not need the approval of others to continue in what I believe. I have been an outcast from society in general for a large part of my life and I figure I probably will continue that way. I think the issue for me becomes when those who are part of the group decide because you do not follow everything they offer, hook-line-and sinker then you are not a part of them and can never be.It's all their way or nothing. They also decide because of a religion, a skin color or ethnic background what you should believe and how you should live your life.
Whether it is the neurodiveristy crowd who rejects how I raise the boys, as if that makes collegeman and HSB any less autistic; Or the neurodiveristy groups that have decided that the boys can only be part of their club if they identify themselves first and foremost as autistic. (Truthfully there comes a time that its up to the boys alone if that’s even an important part of who they are. But its no ones decision or business but the boys and they are not traitors to a cause because they define themselves without that autistic label); Or the community at large who resent the inclusion of special needs children in their school system, as if that means the boys will disappear; Or my Temple, which we just resigned from, because we did not believe in their politics, does not make us any less Jewish, well in the eyes of the Rabbinate maybe it does. Yes that little post touched a huge huge nerve.
Personally, I can define myself as a Jewish (no branch specific)-American, female, independent, who has a lot to say, who likes to write, knit and take care of her family. A female who supports some feminist goals, but is not a feminist, (not 2nd wave, not 3rd wave, and most definitely not the present wave) believes in women’s rights throughout the world (including the Moslem world which is not a politically correct thing to think at the moment), who gave up a career in law because her children and family needed her and who cooks for her family only because no one else can and who hopes that there will be a bright future for her children (who is also terrified that society will remain as ignorant as they are today about those with disabilities and never even give the boys a chance). You see I do not fit into a box, a club or a clique, neither do my boys, and neither does hubby.
I suppose the one group we do belong to is the group called human beings…too bad that’s not good enough....too bad that that's not the only grouping that matters to society and the world at large.
Until next time,
P.S. For any of you that link to Frume Sarah's blog and read the discussion, the last reply to my comment was from someone who calls themselves "nudnik." Nudnik is Yiddish for moron, idiot, fool...no, I am not kidding.