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I often joke that I am sorry that my being in a wheelchair inconveniences you. I often fall back on that sort of dark humour to help me deal in the moments where I feel the most vulnerable. It’s very much a laugh or cry moment and I don’t want to let my guard down; I will make the joke about myself before you have the chance to.

The truth is, although I may joke about being an inconvenience to others, that is actually how many people have made us feel. I say us because, as a family, we are often left with the choice between them going without me or all of us missing out.

You see, as difficult as it is to have to factor a wheelchair user into your plans, very occasionally, that doesn’t mean you can just ignore the problem in the hope it goes away.

That problem is a human being whose needs are just as valid as your own.

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We were recently invited to a family meal, the venue had not been decided upon; we were at the stage of discussing possibilities, and one of the places being discussed was clearly unsuitable for my wheelchair. There were problems with parking, access into/steps within the building, lack of disabled access toilets and it was just generally not a place that was at all feasible for us. It being on my husband’s side of the family, he clearly, yet politely, advised that we couldn’t go to that place and requested that we looked for somewhere else.

It is really a simple request to make; through no fault or choice of our own, that venue isn’t accessible to me, so can we please go with one of the other venues that I can get inside.

Unfortunately, for reasons I don’t actually understand, this request wasn’t fulfilled. We discovered this a week before the meal when we received a menu and request for pre-orders. I can’t magically change my accessibility needs, no matter how very much I wish I could, so we are left with two choices; none of us go, or my husband takes our daughters on his own. I don’t want them to miss out, so I encouraged him to go with the latter option, but he categorically refused to leave me and so none of us went.

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I’ll be honest; it sucked.

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For me. For my Husband. And for our two children.

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It comes down to two issues. Firstly the family member who was planning the meal did not, for whatever reason, want to take me into account when planning the meal. Secondly many family members could see this situation unfolding and not one of them stood up for us.

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It’s honestly a crappy situation, but it speaks to the wider culture surrounding disability. The bulk of people I have met fall into one of three categories:

• There are those who really do think that they shouldn’t have to allow any changes to joint plans just because I am in a chair; that is essentially my problem and therefore has no bearings on their life and choices. These are the people that think that I am the one in a chair, so I should be wholly responsible for ensuring I can do something and if I can’t then I just can’t do it; simple.
• Then there are those who believe that disabled people have a huge chip on our shoulders, which we show when we remind them of our situation every chance we get. They are the same people that don’t understand why there should be any disabled parking spaces, and get annoyed when my chair gets in their way when they want to get around me.
• Finally, we have the people who appear to understand, on the face of it; they always ask if a place is accessible, they attempt to make certain allowances for our situation and they share social media posts highlighting the need to be more accepting in society. But if I encounter a problem; there’s a step inside the venue they had been told was accessible or the lift they had ensured was there turns out to be a stair lift which is useless without the ability to get my chair upstairs, they tell themselves that they have done everything they can and continue on their way leaving me with a forlorn, even apologetic, look. And I am still left with no choices, no options, nothing but an empty longing pain somewhere in my chest.

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T.