Several parts of the Immunodeficiency UK website refer to someone with a primary immunodeficiency (PID) or secondary immunodeficiency (SID) as having a disability. The word ‘disability’ is emotive and can seem like a stigma or label to some people.
If you or your child have an immunodeficiency then you will be covered by the definition of disability in the Equality Act 2010. This doesn’t mean you need to consider yourself to be ‘disabled’, it just means that you have protection under law from unfair treatment relating to your or your child’s medical condition.
Many affected children and adults are able to claim Disability Living Allowance, Personal Independence Allowance and other benefits.
Children affected may need a statement of special educational needs related to the way their condition affects them. This is because ‘disability’ is an umbrella term covering impairments, activity limitations and participation restrictions.
Here are the definitions of these terms and how they relate to having an immunodeficiency:
An impairment is a problem in body function or structure – for a person with an immunodeficiency this is a faulty immune system.
An activity limitation is a difficulty encountered by an individual in executing a task or action – for a person with an immunodeficiency this may mean not being able to climb the stairs in their home because of lung problems.
A participation restriction is a problem experienced by an individual in involvement in life situations – for a child with an an immunodeficiency this may mean not being able to play in an area that has lots of fungus around, such as a playground with bark chippings.