I came across a post recently that I found really thought provoking and thought I would cast that same net and see how others feel.
If someone asks you or your child about their medical condition, what do you say?
My approach to this has changed a lot over time. As time passes I have learned more about people, and disabilities and connecting with others when we are “that” family. I still find that depending on my mood that day my response can vary (and at times, even surprise myself!)
From conversations I have had with other families, I have found generally the question “what is your child’s disability?” comes with these sorts of replies
A - “None of your business. Why would we discuss sensitive/personal medical information with a perfect stranger?”
B - “He asked too many questions so we snapped his legs” (A sarcastic amusing reply someone once told me their husband had said to someone who was indeed asking too many questions. I laugh and cringe simultaneously)
C - You reply with a brief explanation and invite questions, after all, awareness is key.
D - You drastically overshare even offering an awareness leaflet causing the person to edge away slowly grimacing.
E - You get immediately upset retorting “Why can’t everyone just see my child as a child and not for their disability?” (I was a little more like this at the start of the journey)
I’d say I’d like to think I am an option C kinda gal but if I am being honest I am D.
The leaflets I had made years ago at a time when I wasn’t ready to openly talk about Amy’s condition. I didn’t always know what to say.
Now I can talk anyone’s ear off about her… not just medical things, but everything. She is my world and I am so proud to have her as my daughter.
In an ideal world, Amy would speak and be able to tell people whatever she felt appropriate.
I grapple constantly with the guilt of what if she didn’t want me to tell people about her condition? Am I doing right by her? I know for every person who thinks I am approaching it the right way, there is likely someone angrily wishing I wouldn’t tell people about her.
Amy has a very cheeky personality. I feel that if she did speak she would possibly tell them all about herself (probably her love of music above anything else)... or she would maybe just ignore them completely (she sometimes has anti social days.) It's so hard to know.
Once, when Amy was a baby I was enjoying a day out with her and my mum. A lady came up to me and said “Oh was it a birth trauma?”. I can’t recall what upset me more - bringing up the most traumatic days of our lives so nonchalantly, or the possibility she was calling my child “it”?
On reflection I think she had seen Amy’s NG tube and meant “it” as in the event that caused the need for the tube, not calling my child “it”.
Either way, on that day, it hit me like an attack. It was tactless, upsetting, hurtful.
I really wished she had either said nothing at all, or just commented on how lovely she was. Fast forward 8 years and things are much the same in many ways.
Certain wordings sometimes annoy me. “What is WRONG with her”. To the person saying it it may be perfectly innocuous and innocent but something about it really gets to me. There is nothing WRONG with her.
I know what they mean, but can’t they have a little more tact? This is one of many occasions I wished I wasn't too polite to say how I really felt. Instead I internalise it and dwell on it at a later date. I hate conflict.
Sometimes I wonder why they need to know? Part of me thinks what morbid curiosity do they need to satisfy?
People exist in many different ways. We are all different and unique in our own way. But why do we need to publicly address those uniqueness's?
But on the other hand, I would much prefer people come and talk to us and make connections like any other. Being open about a subject can break down stigma and aid tolerance, acceptance, inclusion.
It reminds me of some of the times where we have been in hospital and they want to bring a group of medical students to come and ask questions about Amy.
I understand and respect their need to learn, but in some ways it objectifies her like she is some sort of show and tell Q&A item.
She isn't patient number 285639853 to me, she is my amazing human daughter. Of course to many she does inspire a level of medical curiosity...she has a few features that are of interest to them, I get that.
Also the more we tell them the more they may focus on medicines and treatments for various muscular complaints or whatever she may have going on.
Again, depending on the mood of the day I may say yes, I may say no. I will also gauge it based on Amy's mood. If she is poorly and feeling unsociable I will say no and hope that I made the right decision.
One thing I find in life, and it comes up pretty much daily. You just don't know what someone is going through.
When you see that family with the child in the wheelchair... they may recently have been given a devastating diagnosis and be processing some real heavy stuff.
Or that same family may that day just want others to view them as any other normal family going about their life. They may not want a constant reminder that they are different in some way.
Equally that same family might be really wanting to feel some kindness and acknowledgment from others to feel included and accepted.
Not everyone will have the same feelings and responses and you need to always firstly take into account the feelings of the person being spoken about.
Speak TO them not to who is with them. Invite them to be a part of the conversation whether they are verbal or not.
We aren't a tragedy, we don't want pity, we just want to be as happy as possible and have the best lives we can, just how everybody else does.
My main hope is that Amy knows that above anything else, she is a person. She does not have to be defined by her disability.
There is so much more to her than that. Yes it does impact every area of her life. But it doesn’t change her as a person.
She is witty, sociable, happy, chatty, excitable, sweet, clever, strong, important, valued, beautiful, and a myriad of other things.
Whatever limitations she may have she seems to take in her stride. I do see her frustration, I constantly wish things could be easier for her.
But I mainly wish I could know that she knows we are doing our best and that she thinks we are doing the right things for her.
I am only her parent, I am not the person living with her condition, I am not her voice but I am a strong advocate for her. I only hope that I am doing this right.