[Julie86]

I sat in a meeting on Wednesday morning about adult social care. Usually the people in the room are referred to as people who draw on social care, people with lived experience, service users, customers, clients, unpaid carers, visually impaired etc.
For some reason on Wednesday a person in the group started calling us sufferers. Saying the visually impaired guy a sufferer. Saying me a physically disabled lady a sufferer, a person with learning disability a sufferer. A few in the room expressed an immediate dislike to the word. After this the person set about using the term sufferer at every opportunity. In the meeting I cringed each time the word was used. After the meeting I came home and cried.
What do others think to being labelled a sufferer? How would you feel about it being put on a website to define us? How would others deal with this type of situation?

[Kim73]

I think this is a terrible term to use! I would not like this at all – I do not think of myself as a sufferer or suffering and I don’t think it’s something anyone should decide for another person that that is how they feel about themselves or their life. I think it shows a very negative view of disability that the person using views our lives as ‘less’ or with pity, which I think is why it feels so bad. It is especially bad they continued to use it after it had been raised that people were not happy with the term. Who was the person running the meeting – what was their role/position? I think I would definitely feed back to whoever was organising the session if you are able to

[Mel]

I agree this is horrible Julie and upsetting. Sometimes it can help to take the sting out of these situations to remind ourselves what is going on for them. Often it is the person’s fear of impairment and what they think our lives are like that makes them use this language. Sometimes they just don’t know and are copying what they’ve heard in the media. It’s good some staff voiced their concerns and we hope that the manager had a word with the person afterwards. We can as Kim says also say or write and say you do not see yourself as a sufferer and many disabled people are offended by that word and could they use something more empowering such as ‘disabled person’ or whichever term you prefer. It can be exhausting this constant fighting we have to do, so do give yourself space to express your sadness and/or anger as you did, it all helps to process these microaggressions that often happen daily.

[Julie86]

Thank you for your replies. I am hoping next time I go the chair of the meeting will ask that the word is not used.

[Author]

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