I’m going to diverge from my usual focus of writing about life with a child that has a life-limiting illness, and I’m going to focus this piece on something that has recently occurred within the “special needs writing world” that has caused a division. I tried for a few days to bite my tongue, but there were so many comments thrown around that caused hurt and offense among our community, I find myself having to speak out.
When a writer sits down to work on their latest piece, it inextricably is from a subjective point of view. It just is. One person cannot speak for all, but one person can speak for many. So when it comes to parents, like myself, who write about our journey with our child that has (whatever) special needs, we are 1. subjective and 2. in part writing so that maybe, if we are lucky, other parents in our shoes can say “YES!! That is exactly how I feel! I’m not alone after all!”
A few weeks ago, a wonderful website called themighty.com that has published a number of my pieces became the target of one of the many varying groups within the large special needs world. I’m not going to get into that aspect of the matter, but I am going to address some of the highly inflammatory accusations made by this special needs group toward parents like myself: That we cannot be voices for our child with special needs because we don’t know what it feels like to be in his/her shoes; That we write for pity or attention or other self-seeking reasons, and; That we use the “wrong” language when describing our children’s conditions or disabilities.
Here is my take…
No one knows exactly what my journey is like because it is mine alone. My perception of it, of life, of death, of my son, of doing this as a single parent, etc…all of that and more contributes to how I walk this journey and how it is seen by me. Others may closely relate, and I know many who do, but having said that, it’s impossible for someone that walks a totally different special needs journey (for example, has autism) to really grasp this journey I am on with my son. Equally so, I cannot really grasp the life with autism. Point being: it is unfair and ungrounded for anyone not walking in “our” shoes to criticise why or how we write when it comes to our unique journey.
I do speak for my son. Full stop. End of story. A person not walking on this same journey cannot say, or should not have said, that we cannot speak for our severely disabled children. I find it especially ironic that those who are saying this can in fact speak and write and do for themselves…and thankfully so. If only they could see the irony, too.
You see, I have a son who has never held up his own head longer than 2 minutes. Never. And he is 11 years of age. He has never sat up on his own. He has never walked. He has never talked or written a word. He is fed through a tube surgically placed in his stomach. His brain is severely damaged and he experiences seizure activity on a daily basis. He grows weaker every year, with the last 3 years showing continued decline.
And, I will bury my son. My beautiful, amazing, pure, innocent son who is an angel on earth. So do I speak for him? Yes, by all means, I do. Can I tell you how he feels? In fact, I often can and I am right when I do. Can I tell you when he is happy or sad or in pain or scared? Again, yes I can. I will continue to speak for my son, because he has no other voice. I am his voice.
In speaking for my son, I have done everything from save him from grave medical errors to help save babies yet to be born from being affected by the same virus that damaged his brain. In speaking for my son, I have connected with families and helped them connect with others so that we are not feeling so alone as we walk this often painful path. And, selfish it may be, but writing about this journey helps me process this journey…helps me be strong – for him. This is his legacy, not mine, that is being formed here, and that is worth any dissension from other groups within the special needs community.
At the end of the day, those of us in the special needs world would do well to keep in mind that there are so many different conditions, disabilities and abilities, that we cannot lump everyone together and expect us to all use the same language, have the same thoughts or feelings, or even write for the same reasons. We just can’t…and those that think we can, I would boldly suggest they need to re-evaluate their own perspective. There is enough division and heartache in the world. We don’t need to create any more within our own special community.