Dan is 17 and has Duchenne Muscular Dystrophy, so he uses a power wheelchair full time and, while most people engage with us very well, there is unfortunately the odd exception. This time, after a picnic in the grounds of a stately home, we decided to have a look around the house.

As we walked and wheeled into the hallway, a volunteer came up to me and said “Is the chair with you?” Without pausing for breath, she then explained that “the chair” would not be able to get around all of the property, so when it was time to go, she would open up another exit for “the chair” to be able to leave. All of this without a glance in Dan’s direction. Only when I made a point of asking Dan whether he had heard all of that did she look at him and speak to him.

Unfortunately, I am sure that anyone who is, or hangs around with, a wheelchair user will have experienced this kind of scenario. It is always frustrating, especially if you are not having a good day! So what do you do? If you are the carer, it is not always appropriate to fight the wheelchair user’s battles for them, and I certainly did not want to embarrass Dan. I had an almost overpowering urge to say “Yes, the ‘chair’ is with me, and SO IS THE HUMAN BEING SITTING IN IT! Why don’t you speak to THEM?!”, but on this occasion there were a lot of other people around and I didn’t want to make Dan feel worse (which it would have done).

I did not want to make the volunteer feel bad in front of everyone either. Whenever Dan is wound up by thoughtless things people say to him (such as telling him his power chair looks like fun and can they have a go!), I always suggest he responds to the person’s likely intention, not what they said. Usually, I think people are trying to reach out to the person with the disability and have a positive interaction with them, even if it might not come out very well. In the case of the volunteer, she was genuinely trying to help us and I am sure she had no idea that she was causing offence.

What did we do? We felt that we ought to do something, because people do need to know that it is not appropriate to deal with wheelchair users in that way, and I do think most people (or organisations) would actually want to know if they were upsetting people – I certainly would! It seemed to us that the organisation which owned the property should tackle the issue as part of its training for all of its staff and volunteers, without singling anyone out. So we emailed them and explained what had happened, emphasising that we completely understood the volunteer’s intentions would have been good, but the way these were expressed was not appropriate for us. We also asked them whether they trained staff and volunteers to interact with people who have a disability, along these very simple lines:

  • assume that the person with the disability is capable of thinking and understanding perfectly well, and address them accordingly:
  • if this is not the case, they will have a carer with them who will explain and provide the support you need;
    that’s it! Also, a person in a wheelchair is not “a chair”, they are a wheelchair user.
  • We also asked them to reassure us that both their volunteers and staff are trained to see (and speak to!) the person, not the disability. That really is the heart of the matter.

To be completely honest, I was probably also more likely to see the disability than the human being, before I had Dan, simply because I had very limited experience of the issue and knew very few wheelchair users. That’s why I always try to be constructive, and not feel resentful, in the kind of situation I outlined above. Now that I do have the experience of helping someone to live with Duchenne, and meeting lots of other people with many different disabilities, I realise that I have been given the gift of the ability to see the person first – and I will always be thankful for that.

And the outcome? A very nice email from a senior member of staff the next day, apologising to us both and assuring us that they would revisit some of their staff training straight away. I’m glad we did something, and we’re going to keep on speaking up and asking people and organisations to take positive action whenever Dan is called a ‘chair’ (unless he’s in charge of a board meeting!).