God made us each as an expression of His perfect and wonderful love. How do we reconcile that to the fact that all of us are born faulted. Particularly, how do we reconcile that to idea that some people face incredible challenges because of birth defects, disability or genetic disease? This has been highlighted today while I was reading about Autism Speaks video Autism Every Day and some of the reactions to the video.
I will probably write about the film when I have more time. A good amount of the controversy surrounding the film had to do with its creators who “We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.” A good number of people, myself included, worry about the “biomedical research into causes and prevention” bit. If by prevention you mean prevention in the Down’s Syndrom sense of prevention — no thanks. Aborting children for the sole reason that they might be born autistic is not morally acceptable. Rachel is as much deserving and entitled to her life as any person and has been since the moment she came to be.
But, does that mean that I wouldn’t provide her with just about any opportunity to lead a more normal life? Don’t I want there to be a cure for her? Or is Rachel’s autism something about her that altering it would mean making her someone else?
Even setting aside the reality that at fifteen, even if you could somehow totally remove autism and have Rachel be completly normal today she would still have a devil of a time catching up with the years of schooling and language that she would have to deal with learning. (note that she can not read) But let’s just say we could magically catch Rachel up with this miracle cure too. Would we want to do it? Would we want to do it knowing that in way autism defines some of what and who Rachel is? I think we can only answer yes to this.
And there comes the trick. We love Rachel as she is, but we can also see the dreadful issues that autism causes for her. While she is mostly happy with her life there are undeniable struggles for her because of her disability. One of the things I find most offensively obnoxious when reading on autism forums and boards is those who are diversity/disability activist in the sense that they focus not on the disability of autism as being a profound issue limiting their social interactions, chance to form meaningful relationships or even care for themselves as adults, but on the diversity that autism is. They view autism as something which sets them apart, but also a critical aspect of who they are. Which is true. But when you are reading and posting on a forum and berating parents like myself who are here hoping to find something which will allow their children to do things like learn to read and write and communicate their feelings then something seems off. We aren’t trying to “fix” individuals on the autism spectrum who are functioning in life — supported or independently, we want our children to have that same chance. That is, I suppose, what offends me. The idea that I don’t love my child as she is if I want her to have the opportunity to function on a reasonably independent level, in short, if I didn’t wish that she wasn’t autistic, or at least not as severely autistic.
God created Rachel as she is and that is autistic. There is something about that that is His plan. Vainly I can look at myself and say, Yes, being Rachel’s mother has changed my outlook considerably. Or I could look at my children and see that they are more compassionate and tolerant people than I could have hoped they would be otherwise. But I can also see Rachel in her struggles and her happiness which are different from her typical peers in many ways, but still similar. But I can not, as her mother, wish that she wasn’t so profoundly affected by autism. Some of this is selfishness on my part, but great deal of it is completely focused on Rachel. It is even more true as she enters into adulthood and I am faced with the inevitable concerns that she can not adequately communicate her wants and needs in a way that others can help her achieve them. Is it wrong to wish that Rachel could be other than how she was born? To wish that she wasn’t autistic.
I have to think not. I think there is often a confusion about between the soul and the mind. We judge too much on a persons mental capacity and most specifically on their ability to communicate, even sadly with regards to spiritual things. I was far more guilty of this before I had Rachel than I am now, but I still find myself occasionally slipping into this mindset. But that begs the question, “Is someone’s worth based on their intelligence?” We have to say no to this. There is more to the person than the way their brain functions. A tragic accident or disease which damaged someone’s mind doesn’t make them a different soul, it would only alter the function of that particular organ. Which is why I don’t think Rachel would elementally be a different person if the autism-cure-fairy showed up and made her “normal”. What I love about Rachel is no more her autism than my love for any of my children is based on their strengths or weaknesses. I love her for who she is with autism or without. For her own ease of life I wish she didn’t have to deal with autism but we all deal with what we are given both our blessing and our challenges.