Hi. My name is Lucy Watts MBE and I am 22 years old. I am proud to be a part of The Open University’s Sexuality Alliance to raise awareness of the issues surrounding sexuality that concern young people with life-limiting conditions, and the ethical and legal issues for the people who support and care for us.
We are young people, young people who crave independence, love, relationships, and have wants, needs and desires; our life-limiting conditions do not stop that. We may not have been thought to survive to adulthood in the past, but the fact that we are is a great success for healthcare. However, new issues have arisen within our care and support, and one of these surrounds sex, sexuality and relationships; which is what the guidance produced by The Open University Sexuality Alliance is tackling.
As I mentioned, I am 22 years old. I became ill when I was 14 after a childhood full of issues that were never connected nor explained, Largely I suffered in silence; partly because, as I grew up with these problems, I didn’t realise they weren’t normal, and then when I did realise it wasn’t normal, I feared what would happen if I did tell someone. My teenage years became increasingly medicalised, albeit balanced with a somewhat normal life. However when I was 14, I became very poorly and disabled and my life changed thereon. I became a wheelchair user, housebound, isolated from my peers, increasingly dependent on my mother for my care and my whole life ground to a halt. We battled every system for support, and the normal path of a teenager would never be something I would experience. It became about hospitals, appointments, meetings and a wrath of professionals. Just as my peers found new heights of independence, I lost the independence I already had or had hoped for. As my peers started having relationships, I was completely isolated. Not only this, but I was grieving for the life I had lost, and battling disbelief from the medical profession.
I completed my GCSEs at home, in bed, gaining fantastic results. I then moved onto college, only going for an hour a day, as that was all I could manage, despite studying for three A Levels in the sciences. Finally I was around people my own age; but there was one problem. I was in a wheelchair, pushed around by a carer, and not only that, I had a Learning Support Assistant writing for me as well. I was not a part of the group like they were, and my new peers were almost frightened, not knowing whether to talk to me, how to talk to me, and what to say. So I was surrounded by people my own age, and yet, still, I couldn’t engage or connect with them and vice versa. My life was so medicalised, having been confined to a bed for 2 years by this point, and I was almost off limits, untouchable. I wasn’t like my peers. I wasn’t in on the jokes, up to date on the subjects they talked about aside from our classwork, I didn’t subscribe to the same social circles. So despite being with people my own age, I was never truly a part of the group.
Now, eight and a half years on from when I became poorly and disabled in January 2008, I am still very isolated. I rarely get to meet people my own age, and don’t socialise much even with the few people who did stick by me; none of them my former school friends, may I add. With my condition leaving me bed bound much of the time, except for short periods in my wheelchair, it is very difficult to get out and about. I don’t have nurses who drive, I’m limited by the shifts they work, I don’t have many people to drive, and with an unpredictable condition, planning ahead is difficult. My condition is degenerative, I have deteriorated a lot over the years to the point where I am now unable to transfer, dependent upon a team of ITU nurses and overnight carers to enable me to survive and live at home, Mum, sadly, is now unable to care for me due to a brain tumour, her stroke following a brain tumour removal surgery and now seizures. I am so isolated and different, it can be hard to do anything at all. I rarely get to do things with people my own age, so much of my time is spent around older adults at charity events, meetings, forums and other projects. My charity work is my life and for it I was appointed MBE in the New Years Honours 2016, but it doesn’t get me socialising with other young people. Or if it does, we are purely there for the same purpose, being a voice for young people, sharing our stories, attending meetings and events and helping to make life better for others and be a voice for them.
Even if I were to socialise with other young people regularly, things could never be relaxed and would likely be very awkward. There’s a huge divide between disabled and able-bodied people. Fear, embarrassment awkwardness, insecurity and curiosity would be what I would encounter from most of the population. Disabled people aren’t viewed as being sexual beings. Especially not young people like me with complex needs and life-limiting conditions; we come with an awful lot of baggage, but even down to making the first move, most people would be far too scared or awkward to do so.
I, like other young people, crave independence, want to love and be loved, to have relationships and to be accepted for who I am. I am like any other young person in some respects, but so far removed from them in others. Issues that face me when it comes to exploring my sexuality is started off by the fact that I don’t get to socialise with people my own age, as I previously mentioned. I cannot go to college, I am too poorly for university, am not able to go clubbing or go out much, don’t have the money to go to festivals…so when and where am I supposed to socialise with people my own age? Other issues that affect my ability to explore my own sexuality is my dependence on nurses and carers. My life is a never-ending cycle of intravenous medications, stoma bag emptying, personal care and support to live my life. I couldn’t even just jump in bed for a cuddle, because getting me into bed with all my tubes, bags and wires is a mammoth event, and then we’d constantly be worried about pulling my line or tubes or laying on a bag. We would never truly be alone with me having one-to-one, 24 hour care and my life is so medicalised and complicated with different procedures, medications and needs. Who would see past all of this? It’d take a pretty special person.