By Emily Marsden

Before Daisy was born I had never heard of the word ‘ableism’. Ableism is discrimination against people with disabilities, whereby disabled people are seen as inferior to able-bodied people.

It is a sensitive and complicated issue and I am going to start by saying I am not an expert on the discrimination experienced by disabled people, nor do I speak for other parents of children with Rett Syndrome. I can, however, offer my own perspective on what ableism means to me as a parent and carer of a severely disabled child and how this has begun to shape the way I think about curing Rett Syndrome.

As best I can, I try to apply the social model of disability when thinking about how we care for Daisy. The social model is a move away from the old fashioned, ‘medical model’ and has a more progressive and positive approach to understanding disability. It recognises disabled people as valued and included members of society who do not need ‘fixing’ but rather it is society that needs to adapt and remove the barriers that disabled people face.

I know that many disabled people feel uncomfortable with the idea of being ‘cured’ as their disability is a part of them and if we are to view disabled people as equal to able-bodied people, the idea of changing them to be like everyone else is in itself ableist. 

This is where my views become a bit more complex because research towards a cure for Rett Syndrome is something I have supported and believed in since Daisy was diagnosed just over 3 years ago. I initially struggled massively with the idea of Daisy never being able to walk, talk and do all the same things her twin sister was doing and to a certain extent, I still do. But as Daisy’s condition has progressed and her health has deteriorated I have begun to realise that those are not the things that would enable Daisy to be content and happy.

What is often stopping her from living a comfortable and fulfilling life is the wide range of complex and potentially life-threatening health conditions that she has developed in such a short space of time. Daisy has spent more time in hospital than any 5 year old should ever have to. Some days she barely wakes up because she is so tired from her epilepsy drugs or from a disturbed night of discomfort.

When I put her to bed each night, I say goodnight with a very real fear that she may not wake up the next morning. I struggle to live with the idea that there could be treatments that are yet to be discovered that could improve Daisy’s health significantly. I am unable to just sit back and accept that this is how things are going to be until she can no longer keep going.

One thing I have become increasingly aware of within the Rett Syndrome community are the differing feelings that families have about the way we talk about Rett. Many do not feel comfortable about Rett being spoken about negatively and would rather focus on the abilities and strengths of our children rather than reinforcing how awful it can be.

I am forever grateful for how Daisy has shifted our perspective on life and she has taught us more in the last five years than I can explain. When Daisy is well, she is happy and content with life and during these times I am able to understand why others might feel uncomfortable with their child’s condition being portrayed as something to be feared.

Sadly, our reality of Rett so far is less positive and for a child so young, Daisy’s health is incredibly unstable. If we are to think about ‘curing’ Rett Syndrome, for me, it is less about enabling Daisy to walk, talk and be rid of any form of disability, but more about easing some of the serious health issues that Rett has caused.

If a child was diagnosed with cancer no one would be celebrating it and saying, ‘hey, come on, think of the positives’; the first conversation would be about how we would treat it and make the child better. This is perhaps an unfair comparison but children are dying from Rett Syndrome far too young and our family live in fear that this period of stable health for Daisy will not last.

It is an impossibly difficult balance to strike; living with the hope of a better future for our children whilst trying to appreciate the good in the here and now.

I believe strongly that disabled people deserve to be treated as equal to able-bodied people and I recognise that the language we use and the narratives we share about Rett Syndrome can feed into ableist ways of thinking. In my mind, I try to separate illness from disability as it is not the disability in itself that causes so much of the pain and suffering that Rett can bring, but rather the difficult mix of medical complications that so many of our children go on to develop.

As parents, there are also endless struggles in gaining the right medical and social care for our children due to the diversity of their needs and the limited knowledge on Rett that professionals have.

Reverse Rett are not only funding research into curative approaches to treating the underlying ‘faulty’ gene that causes Rett Syndrome but they are also pushing forward trials into treatments to help improve some of the symptoms many of our girls and boys live with. Reverse Rett have also fought to develop a national centre where a specialist team are able to coordinate and manage the care of some of the most complex cases, this will be lifesaving for some of our children.

I am sorry that I am not able to wholly accept and embrace Daisy’s condition and I wish that I could speak more positively about Rett Syndrome but that would not be truthful.

Our family are trying our best to make sure Daisy’s life is as full and happy as possible but we have a long and tiring battle ahead. We are not just fighting the barriers against disability our society has created, we are fighting a dangerous condition that we may one day have the chance to better treat and understand.