Saturday, 9 February 2019

Guest Speaking - Growing up & Living with a degenerative disability

In November 2018 I was guest speaker at the SHADA (Sexual Health And Disability Alliance) conference.  Here is a 'slightly less personalised' version of my speech.

My name is Emma, I am 38 and live with a disability called Friedreich’s Ataxia. 
The science bit - Friedreich’s ataxia is a recessive disorder characterised by the progressive degeneration of the spino-cerebellar system due to genetic abnormality. Presents in a similar way to muscular dystrophy, MS and motor neurone disease.
Here are a few important facts: 
  • I was diagnosed at age 7
  • FA does not affect the mental functioning of the brain – meaning as my physical body degenerates my mental capacity does not.
  • As you can see, I am a wheelchair user.
  • I can no longer transfer myself so I use hoists.
  • I have carers on a daily basis.
  • I have very little in the way of coordination and physical strength.
  • I deal with other issues that come along with my FA, such as insulin controlled diabetes and an indwelling suprapubic catheter.
Overall I have 9 separate diagnoses not all of them caused by ataxia.
While all of the above sounds depressing, I have learned to live with it.  It is not always easy but nothing ever is whether you are able-bodied or not, we are each dealing with our own problems.  I wish I had something groundbreaking to say to make a difference to all the disabled people out there. However all I really have to say is, life is tough, learn to deal with it.

What my disability doesn't say about me - I love to do cross stitch, read, hang out with friends, go to the cinema, spend time with my family and am a bit of a tv geek.  All activities are gradually becoming more and more difficult.

I believe that this is the biggest difficulty that people with a degenerative diagnosis like mine have to face.  It is this that prevents relationships forming, progressing and creates pressure causing relationship breakdown.

Everybody should think of life in terms of quality not quantity.

People generally think of dying as something that happens to someone old, grey and warm in their beds. A degenerative diagnosis can feel like being slapped repeatedly in the face with your own death everytime your ability slowly declines.

I have grown up with knowledge of my condition and have never not been disabled in some form.
This knowledge does not make my decline any easier but at the very least I know what is happening.

I understand that this is not the case for everyone.  I imagine that being diagnosed with a degenerative condition when you are older is a complete shock and ruins the future ideas and projections that you had for yourself.  Being diagnosed at such a young age meant that I did not have the luxury of visioning my future without a disability it has been and was always going to be part of my life and as a child the reality of that did not particularly depress me, it was just accepted as how it was. Nowadays I ration to myself that everybody is mortal and will one day die.  Having a diagnosed    degenerative disability just means that I have a better idea of when and how I am going to die then most (barring a freak accident). Being diagnosed with a degenerative condition for an older person in their teenage years or 20s or 30s can be really traumatizing because people rarely think about mortality and being diagnosed with a condition forces a person to do this.

Education and WorkI have a degree in Health Sciences and several other miscellaneous academic qualifications. But it took me a long time to get where I am today and the future is not looking too bright right now having just had my first round of Aspiration pneumonia which signifies a movement towards the end stage of my condition however before the conversation starts getting to depressive I will rewind to the beginning.

As I said I received my diagnosis age 7 in 1987 after having been misdiagnosed 3 times because there were no genetic tests in the 80s. After I received my official diagnosis I spent a lot of time in hospital in London this resulted in me missing a lot of my primary school education and I ended up in the bottom of the class for many things. For secondary school I was lucky enough to get into an integrated school so I had contact with both non-disabled people and disabled people with many different types of disability. the contact with disabled people made me feel much better about myself and realise that I wasn't alone and the contact with non disabled people also allowed me to feel like I was just another normal pupil. My social life at this time was being at school and still largely focused on the other disabled people.  I think this is because we had true shared experiences even if we had different disabilities, we were more open to understanding and accepting each other. 

I worry about the upbringing of people with disabilities in the UK today. when I was young and growing up I attended a mainstream School that had a resource centre of for disabled pupils attached to it, this was great because it took care of all my needs but allowed me to interact on a basis that was not discriminative.  I grew up around many different disabilities and people with many different needs as well as people without any particular needs and I feel this helped me grow into a rounded person who has come to terms with their condition and is even able to offer help and advice to anyone else. however the government nowadays have shut down many of those schools including the one I went to. the schools that still exist are therefore overcrowded and it is difficult to get accepted into. disabled pupils are now expected to attend schools that do not have the experience to be able to assist them growing up they do not have the facilities and often makes the disabled person feel like a freak. whilst I understand the idea behind total integration I believe that it is too much too soon and is leading 2 more segregation. I believe that the Forced integration of  disabled people before Society is totally accepting of difference in ability and understanding is leading to traumatic and mentally damaging segregation of disabled people., it is like trying to fit a Square Peg in a round hole not everybody is made the same way.
Recognising disability and making special provisions for it is still segregation which leads to discrimination. True integration is when provisions are made to accommodate difference but this is the norm.

Throughout my school years I never had boyfriends and I never went on a date or did anything like that I think it was not only my confidence or lack of that held me back, it was that I did not have the means to make my own decisions and be independent I still relied on others to physically help me and provide transport and I could not really go out on my own.  I would not describe myself as having been depressed by this but rather repressed. Meaning it did not upset me but it did make me realise how different I was and I felt inside that I will never be on the same level as an able bodied person.
When I went to university this changed and that was when I first got my first real taste of independence.
In 1998 I started university at Coventry to do a degree in health sciences.  The University had adapted accommodation and they provided volunteers to assist the disabled people in lectures etc.  it was during my first year in university that I had my first boyfriend which lasted for 2 years. Then in 2001 I graduated University and that was the end of that chapter of my personal life.

Following University I got a job at Reading Magistrates Courts and I ended up working at the court for 10 and half years which turned out to be my entire employable life.
I medically retired in 2012, the problem that I found following my medical retirement was that even though my body doesn't want to carry on functioning in the conventional 9-5 way anymore my brain is still completely functioning and I still feel that I can contribute hence my voluntary work and now being a Trustee for The Outsiders Trust.

I could go on forever about how the structure of society means that disabled people are unable to contribute because they are unable to conform with the restraints that society itself has created and it is ridiculous to waste such a rich resource of people – labelled as a waste product – burden –
Medical Needs Vs Social Life
Growing up I had most if not all of my physical and medical needs were taken care of however not a lot of attention was paid to my mental health. Dealing with the diagnosis of a degenerative illness at such a young age and growing up with it, or the mental health of the people around me that it affected luckily I have an amazing mum however my father could not cope with my diagnosis and turned to alcoholism and eventually left.
I am not solely responsible there were many factors contributing to my fathers behaviour. He was depressed and abusive to me because he knew that part of the reason that I was disabled was because I received some faulty genes from him. Although correct this is no means is anybody's fault and is just bad luck.

There was also no provision for anything to do with social life or any anything suitable outside of the medicalisation of my condition.
The only social activities were offered to me in order to get me away from my family to give them a break not particularly to be enjoyed by me.

The only Club if you can call it that, I was made to go to one Saturday every month was mainly for those with learning difficulties and was not suitable for me and I hated it.  I dreaded being sent there every month and as soon as I was old enough to be able to choose whether I went or not I stopped going.
Strangely, even though they were for people with disabilities the Venue that they were held in was not suitable for those with a physical disability and I remember several occasions where I needed a wee and there was no toilet for me to use and I had to hold it for hours! 

As a student I would say social life was good attending a Integrated school and then going to university meant that I was surrounded by a diverse community of people so even though the subject of a social life or personal life was not approached by any of my doctors or social workers or professionals I was ok.

when I finished University at the age of 21 and came home my social life ended and my medical needs and condition started to take over. my condition started to decline very quickly I think this is because I spent so much time at university fighting very hard against my condition that I came home and could not hold it off any longer. social services stepped up and I was provided the equipment and the care that I needed however everything I did was emphasized and influenced by my medical needs. I did not have any personal life or any social life and I didn't really see anybody outside of my family or outside of work.

In the noughties whenever a social worker assessment was performed (on a yearly basis) part of the questioning was do you have a social life? do you have friends? are you single?
 A lot of the time it felt like nothing will ever be done about it but I kind of considered that at least they were asking the correct questions, since austerity measures and the end of The Independent Living fund, the questions about social life during an annual review are not even asked anymore and one stage I was even told that my medical needs are so great that there is no budget for me to have any kind of social or personal life, this makes me feel like I am a burden both to those around me and to society it makes me feel that Society thinks I have nothing to offer which I believe is far from the truth even if I can only offer my opinion.  Without a fulfilling life you are not living, you exist but it feels worthless.

After University when my disability started the downward Spiral, I started to become urinary incontinent this was really difficult for me to become coming to terms with because problems such as incontinence are still quite taboo subjects I remember thinking that this is the end my personal life because who is going to want to share a bed or even sit next to somebody who cannot control their bladder.
The continence Advisory Service that I was referred to were not helpful or comforting, treating me as a child rather than a woman in her mid 20's. 
I resented that people who had absolutely no idea what I was going through were the people who were going to tell me what to do, it made absolutely no sense to me.  After struggling with pads and trying out different ways of coping. I have had a super pubic catheter fitted, although the idea of having a permanent catheter and a bag of urine strapped to my leg was not an attractive so what it was actually the best decision for me I can hide the fact that I have a bag with my clothing and the fact that I did not have to worry about being able to have quick and easy access to a toilet at all times was wonderfully freeing and allowed me to think about doing many things that I had never done before.
I did not have a personal life for 17 years following University and to be honest I didn't feel like I needed one, I do wonder if I never felt like I needed one because I assumed that having a life outside of my needs and work was not an option and I just accepted that. I think people need to know that having a disability does not mean that you need to accept the fact that you should not have any kind of life because it's important that there is more to life than just your disability.
Early 2016, browsing the internet, I came across Outsiders which sounded ideal because the other members were disabled and this comforted me as whatever problems I had such as continence and being wheelchair user and being quite weak and uncoordinated would be accepted by other disabled people who might have the same kind of problems. So I filled in the application form. I didn't really expect anything until I got in to Outsiders and joined their Facebook about got to know some people including Tuppy.
I have since managed to have a couple of relationships, none of my relationships lasted a long time but each of them taught me something valuable about myself and helped with my self-confidence and I hope ultimately it help them with their self confidence it also made me a little bit wiser and able to give more and advice.

On a personal note, the relationship breakdowns as much as I hate to admit it, are not all ‘the other persons’ fault. I tend to ‘mask’ my disability and only show my abilities and so when I have let someone close, they are shocked that I am so unable and quickly realise that I am not what they signed up for.
My only defence argument for my masking is that Having a severe/complex/degenerative disability makes you feel like you are a ‘bad investment’. Moreso as I feel myself declining. 

To me Outsiders is about enabling people to have better/stronger/healthier lives by providing support/advice/opportunity to have a personal, social and intimate aspects in their life. 
Working with Outsiders has also shown me the lack of provision that there is for disabled people in regard to having a social life and being able to get out and meet people. There are so many people that are lonely and socially isolated and in need of help it really saddens me.

It is talking to people and finding out how lonely they are and that motivates me to try even harder to help people unfortunately due to the degenerative nature of my condition it often gets in the way of what I'm doing.

Thank you.

International Day of Persons with Disabilities-Equality, Dignity ...

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