Real Lives, My Story

At the Fed Conference 25th June 2014 we had four people from the Get Involved Group prepare talks for our workshop telling us the story of their lives as a disabled person.

They have kindly agreed for these to be shared on our blog, please read on below…

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Luc Raesmith

Hello, my name is Luc Raesmith. Here’s an ameliorated version of the ‘story’ that I shared at the Fed Conference workshop, ‘Real Lives: My Story’ on 25th June 2014 at the Brighton Corn Exchange.

Probably the main barriers and challenges I have had to face in terms of disability have been a lack of recognition and awareness of various ‘disorders’. This meant for me, growing up in the 60s, that I was not diagnosed with my conditions until I reached my late 40s – or 50s.

I wasn’t diagnosed as having Bipolar Disorder Level II until I had reached crisis point and was hospitalised in a psychiatric ward – even though I had been suffering with obvious unipolar depression and anxiety since I was a teenager. I’ve had to endure decades of stigma about mental health conditions; stigma which is only really being challenged – and normalised – now in this 21st century.

Fibromyalgia was not even named as a condition until the 80s. In my late 20s, when I was diagnosed with the loose label ‘Chronic Fatigue Syndrome’, I was up against a lot of prejudice about this term – and the ‘ME’ acronym. These were invisible disabling conditions that were being classed as psychosomatic only. But I had struggled with inexplicable pains and problems all through my body for 40+ years since being a not-strong infant…

It was only when I made a serious attempt on my life by overdose at age 48 that I woke up – literally and metaphorically – to the realisation that I was a dual-gendered androgyne (‘andro’ for short) who needed to be helped by a Gender Identity Clinic. Thus, I began a challenging journey in society that really only recognises the binary, male/female genders, thereby effectively ignoring intersex conditions and other gender variance. I was diagnosed with the somewhat indecipherable ‘condition’ of GID NOS: Gender Identity Disorder Not Otherwise Specified! (Incidentally, having gender ‘dysphoria’ – confusion – is still considered a mental health disorder…)

I was only diagnosed with being on the autistic spectrum – with Asperger Syndrome – last summer when I had turned 54. And this awareness only arose because it was recognised in me by a fellow transgender person, who told me about the 20% higher incidence of ‘being Aspie’ amongst trans folk. I am now an active member of Brighton’s own Assert social support group, which is for adults with higher functioning autism.

My decades of challenging physical, mental – and neuro-behavioural – health have meant that I given up on a lot of study and employment – and relationships – with having ‘breakdowns’ regularly: I have no degree, no career path, no partner… But I do hope to be in housing, in the near future, where I could have a companion dog at home!

But, this is not a doom and gloom story. I see the ‘up’ side of this as my being someone who has had an incredibly interesting journey – including my current transition to androgyne / transintersexual person, through surgery and hormone treatment. Because I kept searching for a more ‘well’ me, I have kept trying new study and new employment; plus, I have always been practising my own brand of creative recycling art and/or writing prose or performance poetry to stay well – and ‘sane’! Now I’m meeting more new folk through participating in the Get Involved Group at the Fed. Rather than think of myself as a person with disabilities, I’m choosing to now express myself as a person with difference-abilities.

Before moving to Brighton, I spent 14 years happily helping my sister with the part time care of my bright & bubbly, beloved niece who is severely disabled with Cerebral Palsy. She is a lucky teenager in that she has enjoyed weekday boarding and respite since 2007 at the highly-regarded Dame Hannah Rogers School in South Devon. I also got to enjoy respite care visits with the family to the South West Children’s Hospice in North Devon too.

One of my Aspie traits is that I am totally colour-inspired and colour-obsessive. I’m a ‘creative’ on the spectrum; not the stereotype of the maths and science ‘geeky’ male! (I do have a diploma in Colour Therapy and have taught colour awareness in adult education.) I’m also an obsessive mobile phone photographer and since last year having been posting images on my own ‘queer art’ blog called ‘Person is not a Rude Word’: Off the Trolley Productions (that’s reference to my Hoppa shopper trolley – and being a self-name-reclaimed ‘unsane mentalist’!) I was very pleased to be selected for Creative Future’s ‘Tight Modern’ 2014 pop-up gallery, at the seafront, for Brighton Fringe; this featured art by 60 marginalised and/or disabled artists.

In Brighton, since moving here 3 years ago to be part of the larger Trans population (because I used to be the “only andro in the village” in Devon), I am putting all my varied skills and experience into volunteering work; this includes being a creativity blogger and arts workshop facilitator for Mind’s LiVE group (LiVE means ‘Listening to the Voice of Experience’). I’m also a compost monitor and sign writer for my local community garden at Dyke Road Park [ – and I do funding research for the Unemployed Centre re the value of their allotments’ harvested produce. ]

I’m a representative for the Trans Alliance, a group which focuses the support and socialising for all trans folk in the city, and we work with the Council on their nationally-awarded Trans Scrutiny for equality, awareness training and development of appropriate services and facilities – much as for any group of people with disabilities. I am also a relatively new member to the Fed’s Get Involved Group.

This July I’m happily (though it is a challenge to keeping my mood and physical health in balance) co-curating an exciting multi-media exhibition that is linked to an oral history & photography book about trans folk in the City, due for Autumn publication, entitled ‘Brighton Trans*formed’. The exhibition will run for a week – and beyond – at varying venues, between Trans* Pride and the ‘main’ LGB&T Pride. My work includes a fotovideo at Jubilee Library called “TransGenderQueer Space: The Accessible Public Convenience Study” – featuring my self and my Radar key at the so-called ‘disabled’ toilets in the city! This can also be found on my own ‘queer art’ blog entitled ‘Person is Not a Rude Word’ on this link:

http://offthetrolleyproductions.wordpress.com/2014/02/20/transgenderqueerspace/

Thanks for reading!

Luc

photo

Wendy Woodland

I was diagnosed with epilepsy at 12 and half years of age. I collapsed one Christmas when I had a seizure, or grand mal. Epilepsy affects people in different ways and there are different kinds of epilepsy. For some people they have twitching or can be mistaken for looking drunk. When I have a petit mal, I stop talking, it affects my voice for a few seconds, and I have a vacant look. Afterwards I go to the toilet and have a cup of tea, then relax for a while.

When I had my epilepsy at 12 I was wishing for a bike but my parents said I couldn’t have one. They took me to the doctor hoping they would say no. He said to me, ‘Wendy do you know when one is coming on’ I said ‘Yes’. So Mum and Dad said ok. When I got my bike there were some rules. I used to go to the tow path quite often. My parents told me I mustn’t take then bike across. They were worried because I can’t swim. I used to take my packed lunch and where did I go? The tow path and I sat there with my packed lunch and bike. So someone must’ve been watching me all those times, because I never had an attack whilst there. I used to meet some lovely people on the long boats

At15 I left school and worked in an orphanage, where I was happy and went to night school around this time for my English. I was then ill with glandular fever and had to leave the orphanage for about 6 weeks, later I worked as a nursing assistant at the children’s hospital in Brighton, the deputy matron asked why I was not training to be a nurse as she watched what I was doing and I explained that it was because of my petit mal epilepsy. I was examined by Dr Wren and was told that there was no reason I should not train as a state enrolled nurse. This I did for 6 years until I married. I then had a son named Keiron and sadly my husband died of cancer two years later. I started work in my church under the hat of Vincent De Paul.

St Vincent de Paul is a charity of my church from the 1800s. Father Vincent de Paul then went out in France in the back streets finding children men and women and picking them up and finding a warm place, giving them soup and bread and helping them out. He then found a house and it grew from there.

After some time I met Jon and re-married. He had a son and I already had Kieron and we then had a daughter Heather. I did quite a lot of cooking of cakes and refreshments for the church and my husband did a lot of sports events which I did the refreshments for.

For 16 years I went on the pilgrimage to Lourdes as a carer, during this time I worked at the Grace Eyer foundation for learning difficulties for adults for 9years.

Then 20years after I met two deaf people when I was at Lourdes. So when I retuned I signed up for classes for sign language for the deaf and I still attend monthly signed masses for the deaf.

Also round this time, I also took a bereavement course to be a visitor to be a listening ear for people in this situation. I was still at Grace Eyer helping people with arts and crafts.

Finally I worked as volunteer at the chaplaincy based at the Royal Sussex county hospital. The Chaplaincy is hospital, school, university, armed forces and prisons. And it means a need for understanding for a listening ear and the problems of the people and any problems involved with them, also just being there for them, as they are all away from home and their dear ones.  I worked on the outpatients dialysis unit. Sadly I had to give this work up because of my health problems such as the neuropathy in my legs. I couldn’t use the steps and inclines of the work place. Neuropathy is where my nerves have died in my legs and fingers, so I need callipers for support of my legs.

I am currently involved with the Fed and the Get Involved Group and want to get more involved now I feel more stable on my new medication.

Thanks for listening.

Little Bay P.

Pat Zielinska

I’m Pat and I’m a Possability People volunteer working at the disability advice centre where I help people  complete benefit applications and also a member of the Get Involved Group.

When I was about 14 I started getting a lot of pain in my joints but it wasn’t until I was 17 that it was diagnosed as rheumatoid arthritis. People often don’t realise that this is different to osteo arthritis. In both cases the pain and difficulty with movement are the same but with osteo- arthritis this is caused by wear and tear whereas rheumatoid is an auto immune disease where the body’s immune system attacks the joints. So as well as the pain there is a lot of tiredness and feeling unwell – I’ve seen that described as like mild flu symptoms. So that’s me, and many years later I’m pretty incapacitated by it but still hanging on in there.

One of my main challenges has been to keep going and to try to make the most of my life – to put in as much as I can, and also to appreciate the life I have, see friends, go out to lovely places and enjoy events. Some people are amazed that I go off over our local nature reserve in my wheelchair and sometimes even that I go anywhere on my own Recently a stranger at a concert asked me “where’s your minder”. Challenge to me can mean overcoming fear when attempting things, like setting off over the nature reserve the 1st few times. There’s also the problem of feeling an outsider, being different from ‘normal ‘people and standing out as obviously looking different. This can be hard to combat. From time to time I have to make myself get out there and not hide away from the world. So in a way some of my challenges actually come from how I feel about myself. Tricky. Sometimes life is made more difficult by a lack of knowledge and understanding by other people but I also receive a lot of kindness which really helps.

Of course there are many barriers in the man-made world such as difficulties with access. With the best will in the world many older buildings just couldn’t be made accessible. Sadly, for me, there are very few friends whose homes I can get into and I’m really touched when people go to a lot of effort to enable me to visit them. I do feel very strongly about the difficulties disabled people face. When working for Possability People’s on- line Accessible City Guide I review restaurants, clubs, theatres, libraries, all sorts of places to let disabled people know the conditions there, and also make suggestions of possible improvements to those running the venues. I have to admit to being obsessed with toilets! My ability to go out and about is greatly affected by the absence of accessible loos. Many aspects of life are getting better for wheelchair users, for example bus travel has improved greatly over the last few years and now nearly all our buses are wheelchair accessible. I‘m a bus user myself and sometimes it seems that my role in life is to teach bus drivers how to use the confusing range of ramps as the bus company doesn’t seem to see that as necessary training!

As to what has inspired me I think it’s really who rather than what, and I have to look no further than Possability People, to 2 people who have severe physical problems but achieve masses. One is our chair of trustees, Sophie Reilley who gives and does so much, especially for the Possability. She’s very clear-thinking and is a lesson in positivity. Likewise Jon Hastie who has made an excellent film about his condition, Duchesne Muscular Dystrophy, and recently set up a charity to give valuable help to others.

As to how I see my future this may sound a bit dismal but because rheumatoid arthritis is a degenerative disease it worsens all the time and I have to recognise that I’m able to do less and less when what I want to do is more and more. So it is a case of keeping trying, pacing myself and not getting despondent and feeling a failure. I’m grateful to those I work with at the disability advice centre who are appreciative and try to make me feel useful. And sometimes it even works!

2014-07-22 10.40.04

Graham Oulton

Hello my name is Graham Oulton, I am 53 years old. I am registered blind and hard of hearing. In 1998 I was found to have high pressure in my eyes by Specsavers and later diagnosed with glaucoma. Incidentally Father and Mother have different types of Glaucoma. I have had two eye operations on my eyes and was declared blind in August 2008. I was referred to the sensory team who trained me on the long white cane. I was very lucky to be in the Brighton and Hove area as I got four hours of counselling due to loss of sight. As some areas don’t have any counselling provided at all. Unfortunately I was not trained to go on buses with my long cane, as this would mean that the sensory support worker would go out of her designated area. Sensory Support Workers must stay in a specific geographical area. After I was trained with the long cane I become depressed and replied on my partner to take me shopping, doctors and hospital appointments. In 2009/2010 I had an endoscopy and was told that I had hiatus hernia and put onto tablets for it. In 2010 I was declared hard of hearing which didn’t help matters. And also had some moles removed and diagnosed with malignant melanoma. I also had an operation to cut out the cancer, which was successful. I had to declare this on my travel insurance for 5years following this, which made travel insurance expensive.

In 2013 I was diagnosed with diabetes class 2, high blood pressure and high cholesterol, which I was given pills for. At the same time guide dogs phoned to say there was a guide dog available for me named Bassey. When I was doing the training with Bassey I was sick every morning due to the pills I had been put on. So they changed the pills to slow release Metaformin, which didn’t make me sick. However the blood pressure tablets were having no effect so they were increased, which has brought the blood pressure down to more stable.

I know this is cliché but Bassey has changed my life. I go on a bus trains and go shopping with him. Also I’m not restricted to mundane things, I go rambling and have free runs once a week with him so he socialises with other dogs. People stop me in the street and talk to me now that I have a dog, whereas before with the long cane people were abusive and never talked to me and avoided me. I also go once a month to the GIG meetings where I meet other disabled and able bodied people to give advice and share experiences that I have had in my life.

I am also a member of Brighton and Hove Guide Dogs and a speaker for them and I currently help with their campaigns.

As for future plans, I am doing a skydive 7th September 2014, if you want to sponsor me go to https://www.justgiving.com/Graham-Oulton/

Thank you for reading.

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