Monday, 20 April 2015

Having a disability IS NOT wrong

Very excited to have this post published over at The Huffington Post!

Ten top questions it is best not to ask a special needs parent

Being honest is hard. When life is different to the 'norm' it can be hard to know what to say. In the early days the below questions confronted me and hurt even if a person means well it doesn't make it easy to answer. These days they don't bother me as much but I still don't like them.

1. “What's wrong with her?” If you are a stranger think about whether it is any of your concern. It might hurt the mum involved or perhaps it is too complex to explain. I don't mind talking about my daughter but it's not everyone's business. Nothing is wrong with her. Having a disability is not wrong.

2. “I understand what you mean”. This can mean well, but unless you are living a version of it you simply can't understand - empathy is much nicer.

3. “God only gives you what you can bear”. This is a tough one and very complex but it does sound condescending whether you are a Christian or not. I survive moment to moment. There is a time and place for everything including exploring the challenges God gives us and how we respond.

4. “What's the prognosis or is she going to die?” I’m not God. Perhaps I don't want to know or maybe I am still dealing with my emotions on this. But please don't keep asking this one.

5. “Is she meeting any milestones yet?” Every progression whether big or small is an achievement and it should not be defined by this overused word to define a child's abilities. We are all unique. How many tears have been shed over children not fitting into the 'norm'? Celebrate the small victories with me not the lack of milestones.

6. “Are you going to send her to a special school?” All options are open to me but just because she has a disability doesn’t mean she can’t go to a mainstream school. Why not rephrase it, what school is she going to attend?

7. “Why can't you do all the therapy yourselves?” I am not a super mom I don't know everything and I make many mistakes. Hindsight is my best friend but physically I can't do all the therapy myself I need the help of trained professionals.

8. “Did you know before she was born?” What does it matter? Another special needs mum asking is different as you are sharing a journey but she is here isn't she? That is your answer.

9. “What happened to her?” Nothing happened to her. She is perfect to me.

10. “Didn’t you think of a termination?” Defenses go up with this one. My choice and here I am.  We all have to make a choice we can live with and this is mine.

Tough questions hurt and challenge. It doesn’t mean they are wrong just need to be approached with care and caution. For a long time I was defensive because it hurt so much but responding in that way sets a bad example to my daughter. I smile and hold my tongue most of the time. Today, being rude seems to be ‘norm’, what happened to being polite and friendly to everyone? Perhaps, next time you meet a mum or even a dad with a child who has special needs be gentle as you don't know what their daily challenges are. Perhaps offer some encouragement and let them tell you their story when ready. Some questions come naturally to a friendship but instead of asking such targeted questions perhaps just talk about what is real and true now. Keep your curiosity at bay. Hold onto the future successes and help if you can. Remember having a disability isn't wrong it’s just a different type of normal.


  1. Nodding my head as I read this-- both in shock that some of those questions would ever be asked (the termination one!!), but also nodding in that this is helpful to read and be reminded of, because despite good intentions, I could see how something someone says could come off wrong. Too bad we can't get this out to everyone in the world to give them context and some idea of what having a child with special needs is like-- and what it is like for the parent as well!

    1. It's crazy what questions some people ask. I remember one lady coming up to me in a car park at the shops. No where is safe. LOL. I was a bit scared with this post - didn't want to come across mean for sharing what questions I don't like. Thanks for sharing and commenting I really appreciate it.

  2. But I did at least share it with Twitter :).