I’ve been stomping around the house this morning arguing in my head and I like those kind of arguments because I win all of them! HA! This particular rant will come in a round about way so roll with me.
This weekend L attended a birthday party for a little girl whose family I have loved and been a part of for many years. A family that supported me when I was going through a particularly bad time many years ago, they included my son and I in their family stuff when I was single, and have been extremely supportive during the trials and joys of Larkin’s birth and subsequent health issues.
They want to be educated about Larkin, her peers, and all those with special needs, so they ask a lot of questions. Educating the general public about this subject is a particular passion of mine so to have people close to me inquire makes me feel as if they truly care and want to be more informed.
One item on the very long list of ways to change how the world views our children is to use people first language. People First Language. What does that mean?
First I will give you a link to a website that I use on a regular basis to help others understand http://www.disabilityisnatural.com/
Second I will give you a link to a particular page on this site that explains exactly what it means to use people first language. http://www.disabilityisnatural.com/images/PDF/pflchart09.pdf
I was surrounded at this party by typically developing children and their families and I like to think that most of them want to make us feel comfortable and included. I must admit that the party was very hard on me because Larkin just can’t participate in most of the things that make these moments ~ memories. I have to constantly remind myself to stay in the moment and enjoy the fact that this little girl is able to attend, something I would have highly doubted in her earlier years. Enjoy that we are surrounded by supportive friends who love her and us.
Our memories will be different and that is OK.
BUT and you all knew there was a giant BUT coming didn’t you?
I read a lot of blogs, tweets, facebook, and websites that are about special needs. Some hold themselves up as the guru or as the channel to talk about disabilities, wanting those of us who blog to post via their website so that parents from all over can connect and learn from each other. There are other items I read that are just conversations from parents about their life and what they are thinking/feeling at a particular moment.
As I move through this life of navigating disabilities, writing IEP’s, putting my girl on the bus, and educating those around me, I have become more deliberate about what and whom I choose to read. I stopped following one particular mother quite some time ago because she kept referring to her child with Down syndrome as her “downs child” and I just couldn’t take it anymore.
I have decided today to stop following and reading those who refuse to talk about our children and specifically their own ~ in respectful and people first language. This will require me to clean up my blogroll and my twitter but I am quite confident that my life will vastly improve because I won’t be arguing in my head anymore (well not as much).
Every single day I try to improve and advocate in a way that helps those around me understand what life is like for Larkin and our family. The biggest request that I have made is that everyone refers to her do so by name or gender. Her medical team, school team, and anyone else who touches my child is expected to value her and her strengths. While they are aware of her needs, they are first and foremost thoughtful that she is Larkin. A little girl. A sister, granddaughter, niece, cousin, friend, and community member.
She is not to be defined by her diagnoses.
I read blogs from parents who have a child with cancer and I have yet to read any that use the term “my cancer child” nor do they refer to their other children (if there are siblings) as “normal” and it makes my stomach hurt to even think of referring to Larkin’s siblings as “normal”. No one has ever called her my “seizure kid” (to my face anyway) It is disrespectful and frankly the bottom line is that it flies in the face of everything those of us who wish to be included are fighting for.
I want my little girl to be included, embraced, and understood. Parents who have gone before me fought for the removal of the word “idiot” from medical/school use and the word retard was considered a step up. That was 50 years ago and today we want the word “retarded” to be removed from medical and school use. We want those who use it as an insult to stop and we advocate for that with every breath. Our children and their various diagnoses’ are going to be targets of those who don’t wish to broaden their view of respect.
So how can I ask those around me to be respectful when daily I read those who have a child with special needs using terms that define our children by a diagnosis? The very parents and advocates, who want change, USE language that is disrespectful, oppressive, and divisive. Inclusion will never fully come until we walk the walk and TALK THE TALK. Until we unite and refer to our children as people and not a diagnosis.
I have reached out to the Autism community leaders and asked why so many parents who have a child with Autism use the diagnosis first. My child doesn’t have Autism so I don’t assume to know the inner workings within the community so I was curious. There were plenty of differing opinions given back to me and there are advocates within that are trying to change how doctors and parents refer to their children with Autism. I suppose it is no different than what I try to do within the community who have children with Down syndrome.
I slip here and there and find myself using her diagnosis to talk about Larkin. I stop, take a breath, and begin again. There will always be slips especially when I am around other parents or service providers and I get a little too comfortable talking in acronym or clinical notes. Larkin deserves better from me. If I don’t set the standard then how can I hold anyone else to it?
“Our words and the meanings we attach to those words create attitudes, drive social policies and laws, influence our feelings and our decisions, affect people’s daily lives, and more. Words, their meanings, and how we use words matter a great deal! “