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How should we talk about disability and MS?

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  • What counts as disability in MS?
  • How should we discuss the possibility of disability, especially with people who are newly diagnosed?
  • Is “disability” the right word to use?

These are difficult questions and I find my thoughts going round in circles.

What the dictionary says

The medical dictionary says that disability is “any result of having a condition that limits what you can do“. This could be anything from a mild disability to a severe disability. Disability could be an effect on moving (including walking), your senses (like eyesight problems) or daily activities (such as bladder symptoms).

For example, if you have a bit of numbness in your fingertips, it can make it harder to put your earrings in. If you have symptoms that affect your vision, it may be more difficult to read the labels on products in the supermarket. These everyday consequences of MS symptoms could be classed as disability.

What the Equality Acts says

The Equality Act gives legal protection to people who find they are discriminated against at work, when buying goods or accessing services. The Equality Act defines disability as “a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities“.

In the examples above, if the person with numbness in their fingertips was a dentist, it might be difficult to hold fine instruments and do their job well. The person with eyesight problems might find it hard to see small typeface on a computer screen, which is important for many jobs these days

MS is automatically treated as a disability under the Equality Act. This means that a person with MS is protected by the Act effectively from the point of diagnosis even though they may not see themselves as disabled at all.

What the public think

The public’s idea of disability can be rather different – often that someone has severe problems walking or has to use a wheelchair. The public, perhaps, looks for outward symbols of disability like walking sticks and wheelchairs. This is not surprising, given the symbol of a wheelchair which is often used for disability.

In reality, three quarters of people with MS never use a wheelchair full time but they may have symptoms, including the more invisible ones like fatigue, which severely limit what they can do. Also, limitations are not always physical ones. MS can cause difficulties with slowed thinking, known as cognitive symptoms, which may affect what someone can do.

It’s the world around us that’s disabling

Much of disability is not about the person but the environment in which we all live. For example, if a shop has steps, then it will not be accessible to all. If the products in the supermarket have labels with tiny writing, then not everyone will be able to read them.

There’s a whole debate we could have about this topic!

Please help!

We are developing new sources of information for people who are newly diagnosed with MS. We are keen to get it right and talk about what can happen in MS honestly. However, we are debating what’s the best way to talk about the impairments that MS can bring.

What would you say to someone who is newly diagnosed?

  • Would you use the word “disability”?
  • Would you use other ways of talking about the subject such as “how much MS can affect what you do” or “the impact of symptoms” or “impairment”?
  • Is it better to be up front and say that there can be disability in MS but it ranges from very mild to quite severe and give examples?

Thinking about when you were newly diagnosed

  • Were you worried about disability?
  • What did you think disability was?
  • Do you have a different definition of disability now?
  • Would you have preferred it to be discussed in information about MS?
  • Was it too soon to think about how MS might affect what you could do?

You can let us have your comments in the box below or email us on infoteam@mstrust.org.uk. It will really help us write better information for people who are diagnosed with MS in the future.

Thanks,

Jane, Information Officer

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