Whose Story is It To Tell?


Whose right to tell my daughter’s story is a question that troubles me. When she was younger and we supported her needs massively, it didn’t seem an issue. But now she’s getting older, and is becoming more aware of her additional needs, it is becoming a different question.

We still support her needs but she is becoming a young adult, and I’m not sure I have the right to put a label on her to help others instantly assume and put her in a category box. I’m beginning to feel that people should get to know her a bit and then make their own judgements, as we all inevitably do about people.

When she was younger, and sometimes her behaviour or manners made her stand out, then it was different. I stood next to her also being judged. Not that I am embarrassed by her, for I’m not. In fact I’m very proud of her. But our relationship was very different then: she was a little girl and I was a father who guided her every move except in free play.

Now she knows her mind better. She knows her likes and dislikes. She knows there’s sometimes more than one way to do something, and I’m being pedantic if I don’t change. ‘That’s not the only way,’ is her often repeated catch cry. ‘We can do it like this.’

And so my right to speak for her is ebbing away.

The way she behaves and what she says in public reflects on her. Yet, and here’s the dilemma, I still have a better understanding about how others may think about her if she does certain things. I know people will judge her, and yes occasionally look down on her. And that’s hard to take and not do anything about.

When people don’t think as highly of her and admire everything she has been through, as I do, their opinion of her and, thus, the way they treat her might be more condescending. In turn, as she feels the energy of their thoughts, she will know others treat her differently. Given time and enough incidents it might become how she thinks the world thinks of her, and she won’t like that.

Nor would anyone really. I wouldn’t. But while other people’s thoughts about us don’t matter, they can be opinions that shape how we interact with the world. If everyone thinks of you in the same way, you question whether that is you and your true ability, regardless of whether they are strangers whose opinion doesn’t matter and their impressions come from a position of ignorance.

What brought these thoughts on in my minds is something Sarah said in this week’s podcast ‘Perseverance Pays Off’. I forget her exact words but it was something along the lines of, ‘Parents should really think twice before they decide to not get a diagnosis.’ She meant in relation to getting extra help for our children when they are in the school system, but I think it also has longer term effects.

A diagnosis is a label that confines and instantly sums up for others to categorise, but it is also a means to a certain type of freedom. The freedom to not be judged by the exacting standards of everyone else’s norm. When others understand why our sons and daughters act a little different, they then have the chance to show the generosity of their spirit – yes I believe most people are innately good rather than bad. Given a chance most normal, rational people do behave like human beings.

Sharing a diagnosis can make life easier and communication more straightforward. But it does come with that limiting factor that we don’t want for our children. The one where people think because you have this, you can’t do that. And that’s why I don’t have the right to speak for my daughter.

In her younger years I dealt with her foibles, and yes I found it convenient to explain away some of her behaviour. But like it or not, if I’m to really give her the chance to be independent I have to make the first move by letting go. I have to give her the right to decide how the world views her, and whether she wants to give the world a reason to excuse some of her eccentricities. I have to be braver with her than my eldest daughter when it comes to giving her the freedom to make her own mistakes. The freedom to be independent. (I don’t know whether I’m up to that challenge.)