Migraine disorder is one of the most disabling conditions in the world, currently ranked as the 7th leading cause of disability. More than 90% of people living with migraine can’t function normally during an attack, and the World Health Organization has stated that severe migraine attacks are as disabling as quadriplegia.
Migraine is not a headache, nor is it just the sum of all migraine symptoms. It is a genetic disorder that causes our brains to over-react to sensory inputs like bright lights, loud noises, strong smells, or even internal feedback from the body to the brain. That over-reaction causes a 'storm' of naturally occuring chemicals, which in turn causes the physical symptoms we experience when triggered.
Most people living with migraine do not think of the condition as a disability and do not want to think of themselves as disabled. That’s understandable, as the stigma against people with disabilities is almost as intense as the stigma against migraine! But we also, as a result of the migraine stigma, don’t feel entitled to ask for any of the supports or benefits that come with identifying as someone with a disability.
Migraine *is* a disability. Watch our interview with Laura from the Australian Disability Law Centre from Migraine Awareness Month 2020.
Let’s look for a moment at the definition of disability.
The first thing to acknowledge is that the term disability is highly contested. Even dictionary definitions of the word vary a great deal. There is a medical model of disability, which is focused on what a person cannot do because of their condition; and a social model of disability which argues people are disabled by barriers in society, such as buildings not having a ramp or accessible toilets, or people’s attitudes, like assuming people with disability can’t do certain things.
According to the World Health Organization, disability has three dimensions:
- Impairment in a person’s body structure or function, or mental functioning; examples of impairments include loss of a limb, loss of vision or memory loss.
- Activity limitation, such as difficulty seeing, hearing, walking, or problem-solving.
- Participation restrictions in normal daily activities, such as working, engaging in social and recreational activities, and obtaining health care and preventive services.
The definition in Australian law is specified in the Disability Discrimination Act 1992 (Cth), which defines disability as:
- total or partial loss of the person’s bodily or mental functions
- total or partial loss of a part of the body
- the presence in the body of organisms causing disease or illness
- the malfunction, malformation or disfigurement of a part of the person’s body
- a disorder or malfunction that results in the person learning differently from a person without the disorder or malfunction
- a disorder, illness or disease that affects a person’s thought processes, perception of reality, emotions or judgment, or that results in disturbed behaviour;
and includes disability that:
- presently exists
- previously existed but no longer exists
- may exist in the future
- is imputed to a person (meaning it is thought or implied that the person has disability but does not).
Neurological conditions are specified in the Act as being a type of disability. To be deemed a disability, the impairment or condition must impact daily activities, communication and/or mobility, and has lasted or is likely to last 6 months or more. Daily activities means the kinds of things you do every day, not that you must be impaired daily. And, as migraine is a life long genetic condition the time requirement is met.
Migraine falls into a class of disabilities known as variable or dynamic disability. This means that our needs and abilities varies day to day. Some days we can get out of bed, feed ourselves, go outside without sunglasses on, or even run a marathon! Other days we may not be able to get out of bed. Most of the people who fit into this category have some kind of chronic illness and are never really sure if they’re allowed to call themselves disabled.
Migraine meets every definition of disability. While our symptoms and impairments are dynamic for most people with migraine, the different wiring in our brain that causes us the over-reaction to sensory inputs is caused by our gene variations is there every day since birth. Most of us don’t notice it because some of that different wiring makes it easier for us to adapt and learn, but it also means we may be much more sensitive to the environment we live in, the food we eat, and sometimes more susceptible to emotions and trauma.
Unfortunately, we are only at the very beginning of research to really understand what is different about the migraine brain. This means that we are many years away from early intervention programs or even screening programs to identify migraine in children, and get them the supports and therapies they need to negotiate those crucial growing years and potentially avoid developing migraine attacks at all.
What we can do now is acknowledge migraine as a disability. It is a spectrum disorder, like for example Autism, so some people will be significantly impaired and others will live a relatively normal life. Access to supports, such as reasonable accommodations in the workplace, and access to disability support pension and the NDIS for those who are significantly disabled by migraine, is usually based on impairment and should never be denied to someone with migraine on diagnosis alone.