Disability means different things to different people. What one person considers disabling others may not.
In England, Scotland and Wales you’re considered to be disabled under the Equality Act 2010 if you have a physical or mental impairment that has a substantial and long-term negative effect on your ability to do normal daily activities. This would include taking longer to do everyday tasks, like getting dressed or eating a meal, and must last for 12 months or more.
There are special rules about some conditions which fluctuate or are recurring. People with progressive conditions are classed as disabled.
There are some conditions where you automatically meet the Equality Act definition for disability from the point of diagnosis. Multiple sclerosis is one of them and so you’re protected by the Equality Act from the moment you’re diagnosed with MS, even though you may not see yourself as disabled. It covers both physical difficulties and symptoms that affect your thinking.
The Equality Act doesn’t apply to Northern Ireland, where the main anti-discrimination law is the Disability Discrimination Act (DDA) 1995.
As everyone's MS is different, it's difficult to predict how much your MS will affect you. You’ll have your own way of thinking about disability, and it will be up to you to choose how you define yourself. MS may affect what you can do but only you can decide if this is disabling. As the symptoms of MS vary so much, you may have different views of yourself at different times.
Typically, people consider disability to be difficulties with mobility and tend to look for outward symbols such as a walking stick or wheelchair. This isn’t surprising, given that the symbol of a wheelchair is often used to represent disability. However, disability can include less visible symptoms such as fatigue or pain.
If you experience numbness in your fingers, you might find it more difficult to do simple everyday tasks such as fastening a button. Many people wouldn’t define themselves as disabled if they experience this problem, but if your work involves tasks that require very fine motor skills or good dexterity, such as a car mechanic, artist, or dentist, then it’s more likely you’d consider this symptom disabling. So, whether a symptom is disabling or not can be very personal and depend on your individual circumstances.
Sometimes living with MS may mean having to find different ways to carry on doing the things that are important to you. For example, you might choose to sit on a stool or chair to prepare food or do the ironing if you have balance issues. Using a walking aid or wheelchair some of the time might help you conserve energy if you have walking difficulties, so you don't become as fatigued. Making some simple changes could mean you’re still able to do the enjoyable things in life such as socialising, as well as the everyday things that need to be done.
For some people with MS, symptoms can be very mild and have very little impact on day-to-day life. However, for some people symptoms may have a much bigger impact and can lead to more significant disability.
Some people with MS ask if they need to register as being disabled. There's currently no national register of people with disabilities. Some local authorities may operate voluntary registers in their areas to help them plan future services. Registration with your local authority won't automatically entitle you to benefits.
The attitudes of other people towards disability can have a big influence on how you perceive you’re treated, and your ability to participate in society and interact with others.
There are two widely recognised models of how disability is viewed:
- the medical model
- the social model.
The medical model of disability is the traditional view of disability which influenced the development of the Equality Act. It focuses on the impairment and defines disability as the impact your physical or mental condition has on your ability to do daily activities. Some people see this as quite a negative way to look at disability as it focuses on what you can’t do and sees the condition as the reason why you might not be able to participate fully in society, experience difficulties in accessing services or affect your ability to live independently.
If you experience visual problems due to your MS, the medical model will see your inability to read a magazine as a consequence of MS.
The social model of disability is a more modern concept. It was created by people living with disability and rather than focusing on the condition, it considers the wider barriers in society and your environment which effectively disable you. So, it defines disability as the consequences of external factors rather than a result of the condition itself. According to this model you don’t have a disability, it’s something you experience. External factors which could be considered disabling include the negative attitudes of others, a lack of understanding about your condition, or physical barriers such as a lack of public toilets making it difficult to go out if you have bladder issues, or no wheelchair access to a building.
If you experience visual problems because of your MS, the social model will see your inability to read a magazine as being due to the lack of alternative formats such as large print or an audio version, rather than as a consequence of MS.
The social model is seen as a more positive way to view disability and highlights the need for society to change to create equality, more independence and choice for everyone.
Although the concept of being disabled may feel uncomfortable or inappropriate at times, it can help you access support.
This can be particularly helpful at work, for example if you need any adjustments made to be able to carry on with your role. This might include allowing you to return to work after a period of illness by gradually increasing your hours or, if heat makes your symptoms worse, supplying you with a fan.
If you do have extra care or mobility needs as a result of living with MS, there may be benefits, grants or other financial support available to you. Some benefits are awarded based on the impact of your MS rather than being linked to your level of income or savings. Social care services can carry out an assessment if you need support to help you maintain your independence.
