The term disability means different things to different people and everyone prefers different terms on how to describe their condition depending on how it affects them. Some people see a negative stigma around the term disability, wanting to avoid the term as it’s associated with not being able to do certain things, but saying that we are disabled just acknowledges the barriers we face on a daily basis and shows that it can be difficult to live with Tourette syndrome at times. Saying that we are disabled may validate our struggles and allow us to receive support in areas of need and identifying with the term ‘disabled’ is nothing to be ashamed of. Tourette Syndrome is classed as a disability under UK law, which means that it comes under the protected characteristic of disability under the equality act, meaning that we are legally protected if we are discriminated against.
The social model of disability is the idea that we are disabled by society- in terms of Tourette’s I think that being disabled by society would be where you're not getting the appropriate accommodations, support and modifications in school, college, university and in the workplace because if you don’t get the right support then it can hinder you from taking part in certain activities and can make it harder to reach your full potential and it can also negatively affect your mental health if you’re not getting the right adjustments put in place. If I didn’t have my support in school that I needed then I doubt that I would have even been able to stay in school let alone pass my exams. Luckily the school were able to give me the accommodations that I needed to succeed so having the appropriate support can turn a whole situation around and allow us to function with more ease and feel welcome in an environment.
Negative stereotypes and prejudices can also be a social barrier because if we're around people who don't understand our condition they may make fun of it due to their own ignorance and that could make us feel quite negatively about ourselves so that would be a massive barrier to developing healthy self-esteem. If people hold prejudices it could contribute to the discrimination that those of us with the condition may face. For example, if someone gets sent out of class or out of an event for something they can’t control, it can be utterly humiliating and could hinder their development of self-acceptance because if others don’t accept the individual then it can be very difficult for them to accept themselves, so it is important that we see our own power within and stand up for our rights. Being ostracised from other people can negatively affect our mental wellbeing as we may start to feel like an inconvenience and it can also make our grades suffer if we are sent out of a class as we may be missing out on valuable information from the syllabus. Luckily, I attended a wonderful and inclusive school and college and that made all the difference in giving me the best start in life and helping me to raise my self-esteem and become confident.
Some people, however, may be disabled by their own bodies and the condition itself rather than the lack of accessibility or attitudes towards it . A person may say that they are disabled by their Tourette’s if it stops them from being able to do an everyday task or makes it exceedingly difficult to do so, and these issues may not always be helped by supportive methods if accommodations fail to find a way around the issue or if it doesn’t bring relief to the individual. Sometimes it is the distress from the symptoms that is disabling rather than what it is difficult to do due to inaccessibility or lack of accommodations. Everyday tasks that Tourette’s may affect can include dressing, toileting, personal hygiene, using technology, sleeping, driving, writing, mobility and so much more. Some people say that they are disabled by their Tourette’s due to the unease that it can them cause in daily life- the strong premonitory sensations, the mental tics, the pain from ticcing and so much more as adjustments and accommodations may not assist in reducing these specific issues.
Nobody with a disability should ever have to feel like a burden as this isn’t our fault. Thankfully, I didn’t feel like a burden but my main issue was that I was severely disabled by my own body which was making me do things that I didn't want to do to such a degree that I had no usable hours in a day and was completely reliant on my parents to take care of me, up until my early adolescence. This level of disability from my own body caused me a lot of stress as it stole my childhood away from me like a thief and my quality of life was virtually non-existent.
Other people may class their Tourette syndrome as something different such as:
A Neurodiversity: A Neurodivergent condition is said to be a neurodevelopmental / neurological condition that causes someone’s brain to function differently to neurotypicals (a neurotypical being someone without said conditions). Examples of conditions that may come under the neurodiversity umbrella can include ADHD, Autism, Tourette’s, Tic disorders, specific learning difficulties and more. The neurodiversity movement sees neurological differences as a vital part of the worlds tapestry as it gives everyone a unique perception of the world. All people with neurodivergent conditions will face some difficulties as that’s what warrants a diagnosis, but the neurodiversity movement makes sure to focus on an individual’s strengths. Those of us with Tourette syndrome do not need to be fixed as we are not broken, and a lot of people can live with the acceptance of themselves and the support from others. Saying that you are neurodivergent doesn’t ignore the difficulties you face, it just empowers you to be confident in who you are and develop self- acceptance whilst being able to confidently advocate for yourself to be supported in an inclusive society. The neurodiversity perspective can be empowering for some people as it can bring confidence as we are different, not broken, and it celebrates the diversity of all people and can allow us to have a sense of belonging in society as everyone belongs. It can help us to see that our condition may not all be bad, it may give us uniqueness and gifts in certain areas.
An Illness: Some people may class Tourette syndrome as an illness depending on how it affects them, some peoples Tourette’s can be so severe that they have no quality of life nor any usable hours in a day so this may not be something that can simply be accepted by the individual as a new ‘normal’ and it cannot be learnt to live with or adjusted to if it causes this level of undue suffering. Some people may also have associated symptoms and co-occurring issues that may not be healthy and may indicate an underlying issue and require some form of 'treatment' or management strategy to make things easier.
The illness perspective also takes into consideration the biomedical imbalances associated with the condition such as an immunoglobulin A deficiency 1, a microglial dysregulation 2, neuroinflammation 3, the association with histamine 4, methylation issues, gut health and food sensitivities, allergens, structural misalignments, hidden infections (if someone has undetected PANDAS / PANS) and many other potential imbalances and biomedical factors that could be triggering or fuelling symptoms. Some people may focus on addressing these factors as it can improve our quality of life and dramatically reduce symptoms for some people.
Whether you prefer to refer to your condition as a disability, neurodiversity of illness, it is a personal choice and we are all going through this journey together. Sometimes the terms we may use to describe our condition can change over time. For example, as a child I thought of my condition as both a disability and an illness as it rendered me completely dysfunctional with no quality of life and was not something that could be accepted as my 'new normal', at around the ages of 13-16 I viewed it as both a disability and a neurodiversity, as it did make it difficult to do things but seeing it as a neurodiversity gave me confidence and a sense of belonging and allowed me to focus on my strengths, and at the ages of 17-18 I had to go on to seeing my condition as an illness as many new symptoms started to arise and we found out that I have PANDAS, which is an autoimmune condition that can cause Tourette's symptoms, so seeing it as an illness takes into account the autoimmune response, the underlying infectious agents and the other symptoms and shows that this is a condition which needs to be addressed to allow the symptoms to reduce and stop the immune system from attacking the brain. Although I do also like to view the positives that it can give me so I don't see it as a 'bad' thing and I still do like the idea of seeing the Tourette's symptoms as a neurodiversity and disability as well, so I would say that it can definitely be all three and whatever way people chose to view the condition is completely valid.
References:
1) Kawikova, I., Grady, B.P.X., Tobiasova, Z., Zhang, Y., Vojdani, A., Katsovich, L., Richmand, B.J., Park, T.W., Bothwell, A.L.M. and Leckman, J.F. (2010). Children with Tourette’s syndrome may suffer immunoglobulin A dysgammaglobulinemia: preliminary report. Biological Psychiatry, [online] 67(7), pp.679–683. Available at: https://www.ncbi.nlm.nih.gov/pubmed/20006327
2) Frick, L. and Pittenger, C. (2016). Microglial Dysregulation in OCD, Tourette Syndrome, and PANDAS. [online] Journal of Immunology Research. Available at: https://www.hindawi.com/journals/jir/2016/8606057/#conclusions-and-future-directions [Accessed 22 Dec. 2020].
3) Medscape. (n.d.). Brain Imaging Differences in Tourette and PANDAS. [online] Available at: https://www.medscape.com/viewarticle/826614 [Accessed 22 Dec. 2020].
4) Rapanelli, M. and Pittenger, C. (2016). Histamine and histamine receptors in Tourette syndrome and other neuropsychiatric conditions. Neuropharmacology, [online] 106, pp.85–90. Available at: https://www.ncbi.nlm.nih.gov/pubmed/26282120 [Accessed 15 May 2019].
