JAMES FULLBROOK

WHAT’S WRONG WITH YOUR SISTER?

I watched the latest season of Sex Education recently. It is not without its flaws but I admire the commitment to inclusivity. Disabled characters can often be spotted in the background and, in this final season, there were two prominent teens with disabilities. One scene was overtly aimed at eliciting empathy from the other characters and the viewer in terms of the barriers faced by people with disabilities. It was on the nose but inclusivity is important.

As with other aspects of life such as sexuality and gender, cultural awareness of disability has risen rapidly in the last decade or so. TV shows like Breaking Bad feature characters with disabilities without always making it the central tenet of their personality while programmes such as The A Word focus on it without being patronising. The inclusion of disabled people now extends beyond the fictional world too. Two bastions of light entertainment in Strictly Come Dancing and Great British Bake Off have both had deaf women in their cohorts recently. The latter even had an interpreter in the tent for the contestant so she could be castigated for her soggy bottom by Paul Hollywood in both a soft Wirral accent and British Sign Language.

Perception of disability is somewhat subjective but the notion that a handicap is purely a physical ailment is fast becoming a thing of the past. The range of conditions is enormous and everybody’s experience is different. It can be defined as ‘a condition that makes it harder for people to accomplish certain activities and interact with the world around them’. For example, ADHD (seemingly more prevalent currently) is recognised as a condition which qualifies for disability benefits and funding. However, a person may not want to consider themselves disabled. There is still a stigma, albeit a dissipating one, surrounding disability but we are working towards a world where accommodating disabled people is becoming the norm and not an afterthought. And that can only benefit society because, according to a 2021 ONS survey, 17.7% of people in England are disabled. That is just shy of 10 million human beings.

I am no disability activist. I have never joined a rally or campaigned for a charity. I must confess to a little bias though. The clue is in the title of this piece. Anna is my little sister by three and a half years. She is blind, has cerebral palsy, suffers from epileptic seizures and deals with a host of other conditions too. Anna needs constant care but I am yet to meet a happier person. It does not matter whether you are watching TV or trying to read a book, you will make a pig noise when she asks you to. It’s impossible to say no to her massive grin and expectant expression. She is nothing if not persistent so I have really refined my porcine snort at the age of 29.

Anna is one of those people who you would instantly recognise as disabled. I don’t remember specific conversations about her disabilities but my parents were always open and honest. As far as I was concerned, she was my sister and marginally less annoying than a typical one. Some parents can find it hard to talk about. It can be incredibly stressful and difficult to raise children with disabilities, complicated or not. This is wonderfully portrayed in There She Goes (BBC) should you ever want an insight.

Anna has had an overwhelmingly positive impact on my life. The likelihood is that growing up alongside her has made me more patient and empathetic. Perhaps I would have got there eventually but she has definitely accelerated the process. Those that grew up in close contact with a disabled person are by no means a marginalised group in need of your sympathy. There is no tiny violin concerto playing while I write this piece. But, it must be said, it influences childhood and sibling relationships in a range of ways which are often dependent on the disabilities themselves. For a previous project, I spoke to other people like me who had grown up in, or close to, a household with a disabled child. All were unique cases but there were commonalities in the answers I gleaned from them.

Some disabled people, like Anna, require lots of care and attention. My parents made sure I never felt neglected and I consider myself very fortunate that I got to do all the things I wanted to do. It is not the same for all families though. One man I spoke to who grew up in the 60s said he resented his brother, who was profoundly disabled, because he felt forgotten about by his parents. They were too busy caring for his brother and were unable to make time. The man felt enormous guilt but that pain of a diminished childhood still emanated in his email. Resources, or lack thereof, were mentioned with big life changes borne of meeting the needs of a sibling. Some moved long distances to be nearer a special school whilst some made the smaller, although not insignificant, sacrifice of giving up their bedroom.

In primary school, children are largely very accepting of difference, and I had absolutely no qualms about my mum pitching up on the playground with auburn-maned Anna sat in her wheelchair. My friends all knew Anna was a bit different but it was not really discussed. It had no bearing on my social standing and I gave it little thought. She still pulled my hair and her music was a bit loud sometimes.

Secondary school was when things changed. Being a teenager is a tricky time filled with awkward moments. The desire to fit in is a powerful one. Having a disabled sibling made me feel like I didn’t. I felt like the only person in the world (i.e. my middling Midlands school) with a sibling who wasn’t ‘normal’. I clammed up if I was ever asked about her and stumbled over my words. I was reluctant to invite new friends over. The last thing I wanted was awkward conversations. I felt embarrassed but for no good reason. The nadir of this period of Anna-associated silence was seconds before a rugby game my family had come to watch. One of my teammates, an intimidating but loveable rogue, made some joke about my wheelchair-bound sister getting ‘legless last night’. I said nothing. Not a sound. Or maybe I even laughed in a desperate bid to fit in and not make a scene. I will always be ashamed of not sticking up for her in that particular moment.

Anna was a good benchmark for friendship. Any friend that came round and made an effort to greet her, even if she did not respond, always gained my respect. With age, I have realised that those who did not make the effort were probably a little scared. To interact with someone who is palpably different can induce anxiety for many and I perhaps I should have been more forgiving to those who could not embrace the discomfort. 

The worst part was the staring. Largely it was other children but there were adults too. Curiosity can be forgiven but ignorance cannot. Confrontation is not my forte and it certainly wasn’t back then either. I did not dare to ask someone to stop staring but I felt very protective of Anna so I made myself into a human shield. I just blocked the culprit’s eyeline and stared back. Airports were the worst for it. All that dead time hanging around. The staring was exacerbated by us jumping (an ironic verb for someone in a wheelchair) the queue to board the plane. The jealousy was palpable. Envious of someone in a wheelchair? Airports do strange things to people. Green gills aside, the temporary VIP status was doubly dashed by the time we arrived. Firstly pierced by the extra stares as everyone else traipsed onto the plane and, upon landing, having to wait for everyone else to get off whilst hoping the inept airline were organised enough to get Anna’s wheelchair to the plane door.

One of my research questions asked the participants when they felt inconvenienced by their sibling’s disability. This may seem insensitive to somebody outside of the situation but, whatever your family dynamics, we all know the mere presence of a sibling can be irritating. A large number of the respondents talked of feeling guilty when it came to having any negative feelings towards their sibling. Quarrelling siblings is the norm in ‘typical’ families portrayed in popular culture but for those involved in an atypical family, there is a weight of expectation when it comes to having limitless empathy. The question of whether that expectation actually exists is moot, the person still feels it.

Once a child came up to me and asked me the question in the title. I have no idea what I said back. However, I feel confident that the question would not be phrased like that now. Whilst sticklers for scientific facts may argue a disability is an error in DNA coding it does not equate to being something wrong. The use of that word to describe a disabled person is inherently, well, wrong.