“So good to see you back on your feet, again!” in which I discuss the well-meaning but misinformed friend

Recently, my daughter was finally Christened.

I uploaded some pictures of this to my Facebook. This picture attracted a comment from a very dear friend

SOOOOO great to see you back on your feet honey!!!

I was annoyed at the comment, and I’m going to tell you why.  It illustrates how people with disabilities have their condition commented on by anyone, at any time, and how we are expected to be thankful for the attention and to confirm their assessment of our status.

Maybe she couldn’t see that in the picture I am actually sitting/leaning on the table.

Maybe she didn’t know how proud I am- too proud to thank my guests for coming from the wheelchair.

Maybe she didn’t realise how I had ignored my partner’s pleading to use the wheelchair or risk “doing myself a damage”.

Maybe she didn’t realise that I didn’t have a wheelchair accessible venue for the Christening, so kept having to get out of the chair and move around on legs.

Maybe she didn’t know what happened later that day when I collapsed.

Maybe she doesn’t know that any outing requires days of bed-rest for me- and the amount of rest needed depends on the level of activity during the outing.

In common with many people, she clearly didn’t understand that many people with disabilities can walk short distances or stand, but the pain, fatigue, potential for injury or worsening of their condition, or other factors mean it is unwise to travel without the wheelchair.

I replied:

Yes, bit misleading really. Was out of the wheelchair cos I was too proud. Then collapsed! And it took days of bed rest to recover…. No big change in my mobility, I’m afraid- it’s quite common for people who need wheelchairs to be able to walk short distances!

As she so succinctly summarised the discussion:

‎:-(

This event reminds me of the ‘heirarchy of disability’ series of blogs (part 1, part 2, part 3, part 4, part 5, so far) by Diary of a Goldfish, which I recommend to you.

As Goldfish says in part 5:

In real life, very few of us have lost total mobility in our legs. Usually, it’s just that we can’t walk far enough to make it worthwhile, because of pain, fatigue, weakness, spasticity, poor co-ordination, stiffness or a combination of the above. In other words, there aren’t many wheelchair-users who have straight-forward impairments which start and stop with the inability to walk (not that even paraplegia is quite so simple). Many of us don’t use a wheelchair around our homes.

It relates back to my last post, about the Home Care lady’s disablism. As a society, we feel able to judge another person’s entire life experience by looking at the snapshot. In this case, literally the snapshot, but in other cases the snapshot may be the dash to the supermarket, school run, or visit to the pharmacy.

It also relates to another interesting topic that I have been thinking about lately- that of “passing”. @ChristineBurns tweeted a link to an excellent deconstruction of the phenomenon of passing, by Dr Cary Gabriel Costello. It deals specifically with the phenomenon of “passing” as male or female with regard to trans people, and it perfectly illustrates my discomfort with it- both as it relates to people with gender dysmorphia and as people with disabilities.

I don’t wish to have to “pass” as disabled, any more that a trans man may wish to “pass” as a man, I am disabled. I don’t believe this really deserves comment from my friends. But, as we have seen, this desire of the public to judge our place in the disability hierarchy is a common difficulty nowadays, and our friends may be as prone to it as the ATOS assessor who is the gatekeeper to disability benefits. Does this, in part, explain their shameful record of service in assessing the disability and functional impairments of applicants, and the resultant protests about them being awarded Government contracts despite such failings?

I dearly love this friend, and she does live abroad, so perhaps she can be excused for misreading the signals. I know she has little experience of disability, so I don’t feel it should be something I discuss further with her, unless she brings it up.

Am I wrong? Should I take the opportunity to talk to her about it? What do you think?

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