Opening my heart…

I recently wrote about how it felt to be excluded from a Christmas party FOR disabled children.

At the time I was so upset about it, partly because I should not have had to ask if it was possible for Adam to attend but also because the answer should never have been “no”.

It had taken courage to even ask if we could come, to ask if someone had ensured it was possible. It was an activity provided by a group we have not attended before, because toilet facilities have not been accessible to us, but I had been involved in many discussions since June so I had to have a little hope. It was a group FOR disabled children, after all.

The reply pinged up instantly with a yes and an e-mail address of who to contact.

I was so relieved, my heart warmed and I immediately posted online that they should put it on the flyer as these facilities are what decides whether many can go at all and that I almost hadn’t asked because it takes courage to risk being told no.

Then the next message pinged up, that the “yes” message had actually been to another person asking a question on the same Facebook post.

Turns out it wasn’t possible. The venue was not already accessible to us and there were no hoists available to hire and that the venue would not have had space to get a hoist in the toilet anyway.

Physical barriers can be overcome. They just need the will.

Next year, wouldn’t it be amazing if every child could go to the zoo and take part in their festive activities?  Or go Christmas shopping in the city centre? Wouldn’t it be brilliant if accessible facilities were everywhere a family likes to go?

To write the post, it took a large glass of wine,  and a couple of sleepless nights.

Because it isn’t easy to write a post about being excluded from an activity for disabled children. I worried that not everyone with a disabled child would understand and that they might make mean comments. My heart was already breaking and I was afraid.

Sometimes it feels like we don’t belong and I am sure that there are some who think we are just being awkward.

Am I asking too much?

Would you ask too?

I will keep asking.

Because my son deserves to be treated with respect, dignity and kindness. Because I have wrecked my back trying to lift him and manage his toilet needs in the back of the car. We should not have had to do that for so long. It was never right.

The responses from people were overwhelmingly supportive, but they did break my heart a little more, and for an unexpected reason.

Too many people thanked me for writing it. Because it was their story too but they hadn’t felt able to speak up.

Too many people said they had stopped asking groups for disabled children if their child’s toilet needs could be met. Because they had reached a point where they just needed to protect themselves from more hurt.

And too many said that in their part of the country it felt like they didn’t belong at events for disabled children either, because they always had to ask if their child could use the toilet at them and because the answer was usually “no”.

So next year I will continue to plead with business managers, with town councils, holiday attractions and anywhere else my son wants to go.

And I am hoping to not be a lone voice.

I am no longer angry or hurting. Holding on to those feelings doesn’t bring change. Working together can.

I am hoping that ALL service providers, charities, council run events and any other group which runs activities for disabled children will be behind me, next to me and occasionally ahead of me.

Because children with complex physical disabilities like Christmas too.

2 thoughts on “Opening my heart…

  1. #yougotthis indeed! Pouring your love out into the world is the only way to deal with this, and it’s a lesson we all need to remember when it seems like the world is fighting against us.

    Liked by 1 person

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