The words ‘disabled’ and ‘disability’ often spark a lot of discussion amongst the cystic fibrosis (CF) community, and some people feel these are not words we should use when describing cystic fibrosis. So why do we sometimes describe CF as a disability?
We are absolutely committed to fighting for a life unlimited by cystic fibrosis – we want to see a day where CF doesn’t limit the lives of those born with the condition in any way. We also know that many of those who have CF don’t want to be defined by it, and can see labels such as ‘disabled’ as negative and not applicable to the way they live their lives. However, there are times when a lifelong condition like CF, which brings a burden of treatment, times of ill-health and the need for regular specialist hospital care, can bring challenges, and this is when your legal rights are important in many aspects of life, including at work and in education.
Your legal rights
If you are treated unfairly because of a disability, or another characteristic such as race, age or gender, this is discrimination. In England, Wales and Scotland, the Equality Act 2010 is the key piece of legislation to legally protect against discrimination. In Northern Ireland, the legislation is the Disability Discrimination Act 1995 (DDA). Under both of these acts, you are defined as having a disability 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'
- a progressive condition like cystic fibrosis, even if you are currently able to carry out normal, day-to-day activities. You are protected as soon as you are diagnosed with the condition
When we use the word ‘disability’ in relation to cystic fibrosis, we are often doing so because we are talking about someone’s legal rights and because we want to ensure that people with CF are protected from discrimination in their day-to-day activities.
One of the key themes under both acts is the duty to make reasonable adjustments for people with disabilities. This can be really important for people with cystic fibrosis – for example, in the workplace a reasonable adjustment could mean an employer allowing flexible working hours to give time for treatments before or after work. The duty to consider reasonable adjustments under both acts runs across a whole range of day-to-day activities, not just at work, and helps to ensure that people with disabilities are protected against discrimination. Philip’s story demonstrates the importance of reasonable adjustments at work, and what can happen when employers get this wrong.
It’s really important for the Cystic Fibrosis Trust, as the national charity representing everyone affected by cystic fibrosis, to ensure that the CF community know their rights and how to use them, and the word ‘disability’ is often absolutely key in making sure people with CF are not discriminated against. We continue to work towards a day when lives are not limited by cystic fibrosis, and an important part of that is ensuring people with cystic fibrosis are not discriminated against.
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