Lucy’s New Year Blog: January 2017

January 2017

It’s hard to feel beautiful in today’s society when “beautiful” is shoved in your face all the time, thousands upon thousands of images we see every day in the media and in our lives generally and we are told and shown what beautiful is. If we don’t conform to that definition, style or ‘look’ of beauty, then we are not beautiful and thus we are made to feel insecure about our looks, our bodies, what we wear, what we do – every part of our lives get judged against what the media portrays as perfect. Disability is automatically a non-starter in the beauty department. Disability is considered a burden, an inherently unattractive feature of a person, we are considered broken. There is the perception that disabled people are – by default – ugly people. How many times I’ve heard disabled people say they’ve been told they’re too pretty to be disabled or too pretty to be in a wheelchair. Where’s the logic in that!? Disability and beauty aren’t mutually exclusive, but are seen as so. Disability seems to automatically make you ugly, different, broken, flawed and to many in society, wholly undesirable. We’re seen as asexual, helpless, inconvenient and unsuitable and people see us as burdens simply due to our label of disabled – even without finding out why we may be disabled.

So many disabled people using online dating sites are too scared to reveal their disability in fear of putting people off. And heaven forbid we have a partner or get married, they’re seen as being kind and doing a good deed and public service by being involved with a disabled person, looked on as a heroic act, and they can’t possibly be truly in love and have a physical, intimate and sexual relationship. That just doesn’t happen to disabled people! How do people think that makes us feel? Many disabled people’s partners were people who saw the person, not the disability, and the disability may impact upon their relationship but it isn’t a factor in the relationship. People’s perception of disabled people is that they can’t possibly be in love and be in a relationship, and they can’t have sex, let alone have children (major taboo alert). Well, they couldn’t be more wrong. We can have romantic relationships, meet people, have sex and some of us have families. We’re still sexual beings, you know! However in the media, and in many people’s eyes, we are ugly, broken, undesirable. We can’t be beautiful, let alone sexy. Why? Because we are disabled. You can’t be beautiful, attractive or sexy when you have a disability.

However there is a quiet revolution going on. Disabled people are redefining beauty, showing that disabled people can be beautiful and, (shock, horror) sexy. Our disability doesn’t stop us being people, people who need to be loved, accepted, complimented and wanted like the next person. It doesn’t stop us wanting intimacy, relationships, marriage, children and spending the rest of your life with that special someone. We still have wants, needs, feelings and desires, we’re not an asexual subhuman species – we’re just normal people!

Happy New Year!


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Moving on…….Junior’s Blog: November 2016

Spare 5Hello everyone!

Recently things haven’t gone quite as smoothly as I had hoped and planned following my move into my own place. I have had a few ups and downs since moving into my lovely, new flat. I suppose this is to be expected. However, this has really opened my eyes and allowed me to see that it’s not always easy living independently, especially at the beginning; but as time goes by, you unpick the challenges which you need to tackle. Maintaining and prioritising things that have to be done, and getting out and about can sometimes be tough.

Although I now have the freedom to go where and whenever I want, it’s still a case of exploring and learning. This is particularly demanding in cold weather and especially having to find out in advance, whether places I plan to visit are accessible. But the one thing I have really enjoyed since moving into my new flat is being able to see and spend more time with my family and friends and being able to do what I want, when I want; for example keeping up to date with Together for Short Lives Transition Summit and The Open University Sexuality Alliance. Such activities enable me to contribute towards each group I attend. I have even been able to educate people around me, both young and old, to help them on our shared journey, in gaining knowledge and supporting our fight for equality.
I’m now working towards meeting new people and supporting others wherever and whenever they may need advice. I want to try and assist others like me who are trying to live independently, get help, support and to explore what’s out there, in order that people will not be stuck indoors but be able to attend various social events and gatherings that may interest them. I am attending a gym regularly and working-out which keeps my mind occupied and my body physically active. Really important! Will be in touch again soon.
Warm wishes.

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Part two of Lucy’s Blog

Lucy Watts

Body image can also be an issue for someone like me. I am not body-confident, and often feel like no one would love me, because they wouldn’t see past all my medical stuff and the people I need to support me to truly get to know me as a person. I am covered in lines, bags, tubes and scars, it’s not exactly a beautiful body. How can you love someone else when you struggle to love yourself? Another thing for me would be the fear of being viewed as a burden, and having to live my life differently if I had someone in my life. My life is complicated and exhausting as it is: it would be so hard for me to have to factor in another person and their wants and needs into my life and routine. We’d always be surrounded by my nurses and carers, and with me completely dependent upon them for everything except speaking for me and using my laptop, it would be very difficult to have a normal relationship with anyone. Also, then the legal, ethical and moral issues would come into play when it comes to my nurses and carers, and that’s a minefield in itself. The Talking About Sex, Sexuality and Relationships Guidance and Standards is there not only for people like me, but for the people who care for and support us. The guidance is much needed as sexuality is something that everyone has the right to explore, and that includes people like myself with a life-limiting condition. It’s hard for us to explore our sexuality, hard to broach the subject with our parents, and hard to know where our carers and support staff fit into the picture. I shall be posting another Blog in December. I look forward to reading your comments before then please!

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Let’s talk about sex…..without fear and taboo

This is the second in a series of thought provoking blogs written by two young adult members of The Open University Sexuality Alliance.

Spare 5My name is Hameed Jimoh (known as Junior) and I was born and raised in South London. I am 24 years of age. Being a member of The Open University’s Sexuality Alliance project is something which will allow me to broaden my experiences. This includes working together and changing the minds of others who think that people who have disabilities should not be able to enjoy the norms in life, such as sex.

When people hear the word sex without it even being completed as in the word sexuality, they get a bit shocked and feel like it’s a taboo subject or basically once you are disabled, that part of your life should be closed. But I’m here to try and change that with a team of people who see past your challenges and who are working hard to demolish the taboo topic of sex and disabilities

Before I continue, I would like to tell you a bit about myself and the experience in which I have encountered before and after an incident which impacted on my life. Well, before this incident, I was out there with my friends basically living and enjoying life as everyone would with a lot of opportunities in sight. Meeting and getting into relationships wasn’t hard then.  It felt very easy.

But after being attacked, my life changed drastically with doctors not even knowing if I would make it overnight. My muscles had been so weakened by the attack and I stopped breathing which lead to an emergency resuscitation which left me with a tracheostomy (tracky) tube located in my throat which helps me to breathe. Over the years I have encountered problems. That said, I am happy to say I have never let other people’s negative opinions get to me. In fact I love challenges and taking risks which some people think I’m crazy for it but I know my body, what I am able to do and do what I want and…. live your life and don’t let people live it for you.

My medical condition is not yet actually known so they have placed it under a category of muscle weakness and deterioration and still can’t give me answers. I have taken it in my own hands to not let anyone tell me what I can or can’t do. I explain to people that just because my life has changed they need to remember that I had a life before this incident and I will continue to live my life, regardless. I can’t let this put me down and get to me.

For two years I was not allowed to eat or drink. I was confined to peg feeds, via a gastrostomy. After continuous arguments back and forth, I started to eat again, starting from puréed food which (trust me) as an adult you really don’t want to experience! Gradually I progressed to eating proper which took time. I started feeling a bit more confident within myself because I didn’t have a tube hanging out of my shirt everyday so that was one tube out one more to go.

The tracky tube has been a big problem because it needs constant medical attention.  It also has also left me with just a faint voice which is slowly, gradually getting stronger and better. I have to use other ways to communicate, like assistance gadgets. I do meet people sometimes but communication may take longer than usual and I have patience to listen and understand others but the thing is do you?

From a guy who had the confidence of going to meet people to a guy who can barely communicate and has carers 24/7 around the clock, it has actually become 10 times harder to even have a conversation and try and start a relationship. This is due to the fact that most people may not know how to even start or get past the fact of your disability; leading them to feel sorry for you. I absolutely hate being felt sorry for because this is reality. Things happen and we as people need to realise that and think bigger rather than being small- minded and judging without getting to know the person.

In spite of my situation I have had a few relationships. At times,  I have felt awkward not because of my partners whom have been able to see past my challenges and helped me gain courage to move forward but because I was in a care home where at the beginning I had some issues being alone with my girlfriend which caused break-ups and make -ups. Having to go through different people, including managers, just to be alone and spend time together was frustrating because it’s not normal. I can say this as a human being so it made me feel if I couldn’t be comfortable with my partner and be left in peace to do as we wish because we are of mature age and not kids. In my view. It’s probably better not to bring my relationship here where I would feel awkward and so would my partner. Even though at times she would say don’t  let the care home get to me, it made me feel like I was being watched closely so 1 had to stop my relationships and put them on hold until I managed to get my own flat and feel free and comfortable without being watched all the time. At last I have my own personal space!

I have now had to look back on my mistakes and would honestly advise, if you get the opportunity to meet someone who sees past your challenge and wants to be with you, then take that opportunity .At the end of the day, it’s your life and you should live it because nobody should live it for you.

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Lose the taboo and let’s talk about sex?

Lucy WattsHi. 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.

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