Isn't it funny how time passes and memories seem to get more vivid and stronger? The memory of the shock, emptyness, the sheer sadness, the memory of that feeling of "I can't cry any more"! The memory of the wishing it was a very sick joke and the constent reminder it is reality!
Two years have past, in those two years I have laughed and cried in your memory. I have smiled when I have seen or heard certain things, have made savage friends with your help, because we seem to have one huge thing in common, we have all been toched by you, but most of all I have missed you. When I say you, I am talking about John Broz, even when I think of his name, I smile.
John was an amazing singer, fab dj and an amazing person I was lucky enough to call my friend. John always backed me up when others would get on to me :) and had an ability to light up a room by merely walking into it. He was always on top form, never was grumpy, if he was I never saw it!
The Rhythm of Our Lives
Sunday, September 29, 2013
Sunday, March 31, 2013
It's 2013 you say?
I know I haven't blogged in ages, shame on me, I know, hopefully this post is gonna be the restart of many more...
As many of you will know I am a wheelchair user. On Friday March 22nd I had to get from Cork to Mayo as I was performing in the Ballina Arts Centre and then heading up to Donegal to perform in the Black Box in Letterkenny.
So I traveled from Cork to Dublin by train with no problem, I then got on a train from Dublin to Westport needing to change at Manulla Junction to get to Ballina. The staff in Dublin were aware of this as were the staff on the train. There was another wheelchair user in the same carriage as myself, she was assisted off the train a stop or two before mine. I got to Manulla Junction, my work colleague got off the train and saw the ramp on the platform and went to hold the other train. Next thing the train I was still on pulled away, I pressed the assistance intercom, it beeped and beeped and beeped again, next stop was Castlebar!
I was assisted off at Castlebar by an Irish Rail dude who said to my assistant "oh we weren't expecting a wheelchair" I was fuming and said "really? I wasn't expecting to be here"! In hind sight I should have said, "funny, my chair wasn't expecting to be here. So he continued talking to my assistant, eventually he listened to me and arranged for a taxi to bring us to Ballina.
This actually happened in Ireland in 2013!
As many of you will know I am a wheelchair user. On Friday March 22nd I had to get from Cork to Mayo as I was performing in the Ballina Arts Centre and then heading up to Donegal to perform in the Black Box in Letterkenny.
So I traveled from Cork to Dublin by train with no problem, I then got on a train from Dublin to Westport needing to change at Manulla Junction to get to Ballina. The staff in Dublin were aware of this as were the staff on the train. There was another wheelchair user in the same carriage as myself, she was assisted off the train a stop or two before mine. I got to Manulla Junction, my work colleague got off the train and saw the ramp on the platform and went to hold the other train. Next thing the train I was still on pulled away, I pressed the assistance intercom, it beeped and beeped and beeped again, next stop was Castlebar!
I was assisted off at Castlebar by an Irish Rail dude who said to my assistant "oh we weren't expecting a wheelchair" I was fuming and said "really? I wasn't expecting to be here"! In hind sight I should have said, "funny, my chair wasn't expecting to be here. So he continued talking to my assistant, eventually he listened to me and arranged for a taxi to bring us to Ballina.
This actually happened in Ireland in 2013!
Friday, December 16, 2011
As I see it week 3 & 4
What a week, at the start of last week I heard from a friend I hadn't seen in 3 months, someone I missed so very much. I also got chatting with my soul mate who I really miss. She understands me like no other, there are no words to actually describe what my life would be without her.
Anyway, what a fortnight it has been, I was in the UK and caught up with friends. My friend Imogen kindly let me stay at hers, which was nice, I had the pleasure of meeting her dad and finally met Fran too. Monday two weeks ago I went up to Sheffield to see Rachel and Hannah as well as Scoob and the cats. Its nice cause Rachel knows me fairly well and understands how life goes up and down. We went to see Arthour Christmas and for a bite to eat. The next day we all went to a village, it was stunning, a quaint place with ducks on the river and small streets with lovely shops, we went for a bite to eat and got me back to the traiin to get back to Imogen.
On the Wednesday I hit London, met up with a good friend, Nuala, I missed her loads. It was awesome, we went fo a dodgy Italian cafe then did touristy stuff, took photos of the sights and Christmas trees and then went to Hyde Park to the Christmas Market, awesome, so going back next year! They had everything from wooden ties (so cool) to candy floss, a circus to an ice skating rink (yes, I was tempted, ohhh bring on next year). It was freezing, couldn't feel my feet, but so worth it!
I travelled back to Ireland on the Thursday. I really wished I could have stayed longer. Anyway I got the train to the airport and got there in plenty of time. I only had carry on, so went for a look around the shops in the Airport before going to the gate, gate 50, I was brought by the assistance company, the guy remembered me from before. The gate was changed so someone came to help me to the other gate, I don't know if she was new to the job or was having an off day, but she didn't seem all there. However she was there to do a job, which she was doing. She assisted me to and and onto the aircraft and brought my bag for me too. I expected the flight to be rough as it was windy, but it was fine.
It took a while to disembark the aircraft as only the front door could be used due to windy conditions. I was brought down by lift and then brought into the airport. Then I knew I was back, the universe decided yet again to see how far I could be pushed, my carry on bag was missing! I went into baggage reclaim, the crew thought it might have been sent there, no joy! The Ryanair staff were amazing, took a report and details and said they'd track it down. I ended up staying at a friends house, by 9:30 I hadn't heard anything from the airport so rang them, but they had nothing to report! The next morning the Ryanair team rang and informed me my bag had appeard over night. So my friend and I went out to the airport, it was like we were on a secret mission, I had to find a phone by the jump juice bar and dail a digit and wait for instructions, which were to follow the yellow line. We waited at the end of the yellow line for my bag, I got it, I was delighted, opened it to check it, my laptop was missing! Very unimpressed! Yet another report had to be written up so I could claim off my travel insurence. The most gutting part is I lost it because I accepted and trusted the support which was offered!
Anyway I got back to Cork and met up with a friend for yummy food and drinks. Saturday was busy, I had to go shopping for my fantasy ball costume and meet a friend who I hadn't seen in a while and also go to some craft fairs as well as have dinner with the Meetup group, Vixen's Rainbow! I managed it all and arranged to meet my friend the next day too, oh he was selling flags and collecting so I got attacked by stickers, but didn't mind, it's become a yearly tradition and I missed him so much while he was away. I got a really nice hat at the LinC craft Fair too. I decided to go to the fantasy ball as a rock chick, that's right, I had a studed choaker, jeans with leather, tats, leather jacket and my 16 hole boots! It was a great night, much dancing was done. The venue was up stairs and the loos were up more stairs, not easy!
Sunday I went into town, met my friend again and most days this week, except Tuesday. Dad came up Tuesday and put up my decorations for me, the place looks good, not over done. Just not in the mood this year. At the end of September a really good mate of mine (who I am in the process of writing a blog about) past away, it really shook me, since then, my priorities have really changed, and right now, Christmas doesn't feel to be a main one. However having bits up about the house helps as well as Christmas shopping started! Yesterday another really good friend came up from Kerry so we went out for a few drinks which were really enjoyable, nice to see some familer faces.
Now I am off to try and sort out my travel insurance, oh fun!
Anyway, what a fortnight it has been, I was in the UK and caught up with friends. My friend Imogen kindly let me stay at hers, which was nice, I had the pleasure of meeting her dad and finally met Fran too. Monday two weeks ago I went up to Sheffield to see Rachel and Hannah as well as Scoob and the cats. Its nice cause Rachel knows me fairly well and understands how life goes up and down. We went to see Arthour Christmas and for a bite to eat. The next day we all went to a village, it was stunning, a quaint place with ducks on the river and small streets with lovely shops, we went for a bite to eat and got me back to the traiin to get back to Imogen.
On the Wednesday I hit London, met up with a good friend, Nuala, I missed her loads. It was awesome, we went fo a dodgy Italian cafe then did touristy stuff, took photos of the sights and Christmas trees and then went to Hyde Park to the Christmas Market, awesome, so going back next year! They had everything from wooden ties (so cool) to candy floss, a circus to an ice skating rink (yes, I was tempted, ohhh bring on next year). It was freezing, couldn't feel my feet, but so worth it!
I travelled back to Ireland on the Thursday. I really wished I could have stayed longer. Anyway I got the train to the airport and got there in plenty of time. I only had carry on, so went for a look around the shops in the Airport before going to the gate, gate 50, I was brought by the assistance company, the guy remembered me from before. The gate was changed so someone came to help me to the other gate, I don't know if she was new to the job or was having an off day, but she didn't seem all there. However she was there to do a job, which she was doing. She assisted me to and and onto the aircraft and brought my bag for me too. I expected the flight to be rough as it was windy, but it was fine.
It took a while to disembark the aircraft as only the front door could be used due to windy conditions. I was brought down by lift and then brought into the airport. Then I knew I was back, the universe decided yet again to see how far I could be pushed, my carry on bag was missing! I went into baggage reclaim, the crew thought it might have been sent there, no joy! The Ryanair staff were amazing, took a report and details and said they'd track it down. I ended up staying at a friends house, by 9:30 I hadn't heard anything from the airport so rang them, but they had nothing to report! The next morning the Ryanair team rang and informed me my bag had appeard over night. So my friend and I went out to the airport, it was like we were on a secret mission, I had to find a phone by the jump juice bar and dail a digit and wait for instructions, which were to follow the yellow line. We waited at the end of the yellow line for my bag, I got it, I was delighted, opened it to check it, my laptop was missing! Very unimpressed! Yet another report had to be written up so I could claim off my travel insurence. The most gutting part is I lost it because I accepted and trusted the support which was offered!
Anyway I got back to Cork and met up with a friend for yummy food and drinks. Saturday was busy, I had to go shopping for my fantasy ball costume and meet a friend who I hadn't seen in a while and also go to some craft fairs as well as have dinner with the Meetup group, Vixen's Rainbow! I managed it all and arranged to meet my friend the next day too, oh he was selling flags and collecting so I got attacked by stickers, but didn't mind, it's become a yearly tradition and I missed him so much while he was away. I got a really nice hat at the LinC craft Fair too. I decided to go to the fantasy ball as a rock chick, that's right, I had a studed choaker, jeans with leather, tats, leather jacket and my 16 hole boots! It was a great night, much dancing was done. The venue was up stairs and the loos were up more stairs, not easy!
Sunday I went into town, met my friend again and most days this week, except Tuesday. Dad came up Tuesday and put up my decorations for me, the place looks good, not over done. Just not in the mood this year. At the end of September a really good mate of mine (who I am in the process of writing a blog about) past away, it really shook me, since then, my priorities have really changed, and right now, Christmas doesn't feel to be a main one. However having bits up about the house helps as well as Christmas shopping started! Yesterday another really good friend came up from Kerry so we went out for a few drinks which were really enjoyable, nice to see some familer faces.
Now I am off to try and sort out my travel insurance, oh fun!
Sunday, December 4, 2011
As I see It (week 2+)
Yes, two posts in one week, how awesome? Ok ok not very, I just have plenty to say this week. After my first post the reaction surprised me. Last weekend I went up to Dublin, I was getting withdrawals, hadn't been out in Dublin since pride. Seriously, I love it. Dublin feeds my need to have culture and really interesting conversation and people in my life. As soon as I hit Dublin, I am greeted with a familiar smile by one of the guys from customer service, spoken to like a human being, treated with respect and brought to the luas. As opposed to Cork, where I am met by customer service with a 'why are your breaks on, I can't move you'? This is said as I am getting into my chair. It seriously wrecks my head, it feels like I am being spoken down to. Anyway when I got to Dublin after I got off the Luas, I went to Supermacs, where the staff were most helpful.
After grabbing a bite I went to my hotel, again the staff were awesome, helped me up to the room and all. I went out, up to the Front Lounge, where I was greeted by a lovely chatty bouncer, who opened the side accessible door for me. I went in and found the Running Amach gang, it was nice, I met some really nice people. After drinks, chats and laughs, we went around to Klub Diva. I went in the door and instantly saw familiar faces, people who I knew I could join. Then the dancing started, and didn't really stop until the music stopped. Other friends appeared, my blog post was mentioned and there was a genuine sense of awareness about basic things, like where the loo was located (downstairs). It was a brilliant night, lots of laughs, good conversation and awesome moves thrown on the dance floor by many a people. I can't describe the feeling of being in that environment. It's like ability or disability doesn't come into it, its about ones personality and interests, I love it. I was even asked if I had scored with anyone? That surprised me, it surprised me because it is a question never asked if I was socialising on my local scene. Sunday I caught up with a friend, we hadn't spent time with each other in a while so we went for breakfast/lunch to Dun-Laoughaire. It was stunning, clear sunny skies, cold, but not too cold, a nice meal and great catch up.
Wednesday I traveled to the UK via Dublin. Traveling with RyanAir I find so easy, the staff so helpful, once the assistance is booked in advance. Being in the UK with a disability is so different. Ok to give an example, being in a train station in the UK you are asked 'can I help you' as opposed to 'who are you with'?. Saturday, December 3rd was International Disability Day, so my friend Imogen and I went into Cambridge with wheelchair Becky (a doll, barbie size, in a wheelchair), Imogen photographed Becky in random places, like in the Disney Store, outside Kings College, on the conveyer belt in Yo Suchi as well as eating yummy fudge amongst other things. We had a great day, people were so interested and actually wanted to be involved in our fun. Imogen posted pictures and updates up on twitter and the feedback was fab. It is a shame the day still isn't very well known or marked by the general public, but all in time I guess.
It baffles me how attitudes can vary depending what part of the country you are in as well as the world. Is it about education or is it something else, something deeper?
After grabbing a bite I went to my hotel, again the staff were awesome, helped me up to the room and all. I went out, up to the Front Lounge, where I was greeted by a lovely chatty bouncer, who opened the side accessible door for me. I went in and found the Running Amach gang, it was nice, I met some really nice people. After drinks, chats and laughs, we went around to Klub Diva. I went in the door and instantly saw familiar faces, people who I knew I could join. Then the dancing started, and didn't really stop until the music stopped. Other friends appeared, my blog post was mentioned and there was a genuine sense of awareness about basic things, like where the loo was located (downstairs). It was a brilliant night, lots of laughs, good conversation and awesome moves thrown on the dance floor by many a people. I can't describe the feeling of being in that environment. It's like ability or disability doesn't come into it, its about ones personality and interests, I love it. I was even asked if I had scored with anyone? That surprised me, it surprised me because it is a question never asked if I was socialising on my local scene. Sunday I caught up with a friend, we hadn't spent time with each other in a while so we went for breakfast/lunch to Dun-Laoughaire. It was stunning, clear sunny skies, cold, but not too cold, a nice meal and great catch up.
Wednesday I traveled to the UK via Dublin. Traveling with RyanAir I find so easy, the staff so helpful, once the assistance is booked in advance. Being in the UK with a disability is so different. Ok to give an example, being in a train station in the UK you are asked 'can I help you' as opposed to 'who are you with'?. Saturday, December 3rd was International Disability Day, so my friend Imogen and I went into Cambridge with wheelchair Becky (a doll, barbie size, in a wheelchair), Imogen photographed Becky in random places, like in the Disney Store, outside Kings College, on the conveyer belt in Yo Suchi as well as eating yummy fudge amongst other things. We had a great day, people were so interested and actually wanted to be involved in our fun. Imogen posted pictures and updates up on twitter and the feedback was fab. It is a shame the day still isn't very well known or marked by the general public, but all in time I guess.
It baffles me how attitudes can vary depending what part of the country you are in as well as the world. Is it about education or is it something else, something deeper?
Friday, December 2, 2011
As I See It (week 2)
Hey, right, firstly I want to say thank you for your feedback. It has been an interesting and busy week, which has helped shape the forthcoming post.
Five years ago, I was in the local centre for women who identify as lesbian or bisexual in Cork, Ireland, Linc, and I saw a poster; seeking people in wheelchairs who wanted to dance, there was a date, time and venue for a workshop, so I decided to go along.
It was on a Saturday morning, with something like a 10am start (madness, Saturday's are for sleep, aren't they?). I went along and knew nobody, had no expectations, didn't even know if I'd like it. There were a good few there, by the time we took our first break I was hooked, completely addicted, I was moving my body in ways like never before and using my chair as a tool to dance, as opposed to using it because I had to. I was dancing on my knees and it was seen as beautiful. When I went home after the first day, I could feel it, my mobility had improved, I went back on the Sunday, thirsty for more, my body felt like a spunge which wanted to soak up all of this new information, information of how to move, how to travel in my chair, how to interact with other dancers to mention but a few. Anyway there were a series of workshops which for me built up more of a hunger to keep continuing. On completion of the workshops, which took place in both Cork City and West Cork, weekly community classes started up, taught by Tara Brandel and Rhona Coughlin, who also facilitated the workshops. Again the weekly classes had me hooked. I continued these classes for a while and got to work with people like Jess Curtis. I started taking other workshops which Tara led in a local school of dance who supported Croi Glan from the start. My love for dance was growing. I developed skills in things like contact improv, taking and giving weight, working on my own as well as with a group, becoming aware of space, getting used to using my body both in and out of my chair and allowing my chair become part of my body. In June 2008 after a lot of rehearsing and chocolate biscuit cake I was performing in a dance piece, Body, choreographed by Tara Brandel as part of the Cork Mid-Summer Festival. I was dancing with dancers from other companies as well as Croi Glan. dancers who have been dancing for years, I was actually sharing the stage with them! Just before we performed 'Body', Tara asked me if I would be interested in making a debut with her, I couldn't believe it, needless to say I said yes. A few months later I was introduced to a new dancer, Dawn and a choreographer, David Bolger. David had never worked with an integrated company. He blew my mind, he is the best in Ireland you could wish to work with, he really listened and took every body's opinion on board, listened to our stories and took a genuine interest in the company and us as individual dancers. He created a piece with us, On The Wall and anytime we perform it, I feel an amazing sense of pride. I don't know what it is, maybe the piece is just so close to my heart because a chunk of it is about how I learnt to walk. After working with David and premiering his piece at Cork Mid- Summer Festival, we started working with Adam Benjum. On working with Adam I got to know two more dancers, James O'Shea and Tom Pritchard. Adam created a piece, This Is, which we premired at the Dublin Fringe Festival 2010. Making the piece I found tough, looking back is it any wonder, it was just my third professional piece. It is a really good piece and even got a four star review in an Irish national newspaper, The Irish Times; “In spite of the billing, /This Is/ (sic) isn’t a dance-in-progress anymore, but a fully-formed piece that sets new standards for CroĆ Glan Integrated Dance. Choreographer Adam Benjamin is a veteran creator for disabled and non-disabled dancers and has never focused on the politics of different bodies onstage. Instead, he gives unwavering attention to the movement and /This Is/ displays this creative guile, particularly in the seductive quintets where the performers continually merge and split into short duos and trios. His craftsmanship was well-rewarded with committed performances from the five dancers”. In between meeting and working with Adam the company did heaps more. took various workshops with various people such as Jeff Wallace, Scott Wells to mention but a few. When we met and worked with Jeff he told us of a contact improv festival in Willard Wisconsin USA.
After 1the Fringe Tara, Dawn and I traveled to the US. It was awesome, we danced at GLACIER, the contact festival for six days. It was held in a Christian retreat centre in the woods where some shared cabins, others camped and the rest stayed in the centre. The six days were amazing, life long friends were made and so much dancing was done. The GLACIER gang are an amazing group of people, so supportive and caring. After the GLACIER festival Dawn, Tara and I traveled up to Minneapolis where we went to a performing arts school, yes, just like Fame! We also met an amazing group, Interact. Interact is a group of people with disabilities, all types and their sole focus is art, every form of art, from visual to performing. Their work shop and rehersal space was at the back of their amazing shop, where they sold their goods The striking thing about the group is they encouraged and supported each other, they gave each other genuine praise, that does not happen in Ireland within the disability community, mind you, does it happen in any community? We also met a group called Young Dance, a dance company who wanted to become integrated. After a few days in Minneapolis we drove to Madison, it was awesome, we were meeting up with most of the folk we had met at GLACIER and also staying in one of their houses. While Tara and Dawn did a wall running workshop I went to a local contact jam. It was funny, I was dancing with a group who I was so comfortable with, but yet a week previous, didn’t know them at all. When I first met them I remember doing contact with them was really different, I wasn’t been given any weight at all, then I told the group I could take weight and dancing with one group of people for six days, things changed, it was now like working with people I knew for ages. After that Dawn, Tara and I visited an elementary school and spoke to the students, fairly awesome.
After our trip State side we worked with a few groups in Ireland and did performances in County Cork doing double bills with the Cope Foundation as well as with Tara and Shana Brandel with their aerial duet ‘Sisters’. We also did a three week aerial course with an amazing french woman, Genevieve Mazin. A lot of preparation went into this, both Tara and Dawn advised me what stretches to do to stretch and tone specific muscles. The day finally came, we, Dawn, Julie and myself went down to West Cork to do three weeks of aerial, Nellie, the Aussie, who came from Down Under to do work experience with the company. The aerial work was awesome, sometimes frustrating in that I had to figure out how to move my body in a harness. I mastered it and all of the stretching really paid off, it allowed me have the ability to lie on my side and back while in the harness and to come to standing after a swing as well as change the direction of my body in mid swing, ok it may not sound all that great in writing, but in reality and my head, wow. You see I honestly did not know how much aerial work I would be able to do, or how my body would react to it.
After doing the aerial project, we went into working on a new project, whereby a core group of dancers had a set piece of choreography and local community groups of an area would be slotted into it. The piece, ‘In These Islands Are My Body’ by Tara Brandel explores how the environment has changed over a life time. Over the Summer of 2011 we performed it in Cork, Clonmel, Callen, Mayo and Minneapolis. We also performed This Is and On The Wall in Barcelona. The company has also performed at other festivals and taught at various places, including Barcelona.
Tuesday two weeks ago, the company was filmed my an Irish television http://www.tg4.ie/en/tg4-player/tg4-player.html check it out, it was aired Thursday just gone. Last Tuesday the company celebrated its fifth birthday. It was lovely, an informal sharing of snippets of some of our work in between having some yummy food with company friends.
Monday, November 21, 2011
As I see it
Now I am finished with studying, for a while anyway, I am putting some time and energy into blogging amongst other things. I have a number of interests ranging from the intellectual side of things to the basic human side.
For quite some time it has bugged me how disability has been ignored, not discussed or even asked about. Also how disability is withing the LGBT Community, a minority within a minority. I feel a lot of people, in general, see me and jump to their own conclusions about what they think they see as opposed to asking if I would having a conversation about it.
I am sure a lot of people, from every walk of life can relate to being out and about and someone asking “how are you”? What gets me is before you can answer that person, they are gone! I mean if you are not going to hang around for the answer, why ask? Imagine going into a shop and being asked “how may I help you? So then you start asking for what you want, and halfway through the shop assistant goes on their lunch!
So I have decided, in the age of the internet this blog entry is going to be about my disability.
First off I should state my obvious disability is completely a physical one and is called “Cerebral Palsy”, CP for short. I will write how CP affects me as there are many different types of it.
CP is not a disease or an illness but a physical impairment affecting muscle control and movement. A person/child with cerebral palsy has difficulty controlling movement and posture; they may have problems walking, talking, eating and playing.
I have nearly all my movements under control, my posture is great, fantastic really. I learned to walk when I was 9 and it improves with practice, I only use the wheelchair when I have to like going out and about on my own I have two, a powered one, johnny 5 and the manual, the batmobele.
Cerebral palsy does not get worse over time. There are different causes of cp, the majority of cases are due to negligence just before, during or shortly after birth. I have CP because I wasn't delivered fast enough and could have been and the cord was around my neck 3 times, so there was lack of oxygen to my brain.
Children with CP have damage to the part of the brain that controls muscle tone and movement. Muscle tone may be too tight (hypertonia) or too loose (hypotonia) or mixed. Infants with CP are often slow to reach developmental milestones such as learning to roll over, sitting, crawling and walking.
Talking is difficult if control of the muscles in the lips, jaw, tongue and other muscles involved in speech is affected. - apparently my lower jaw is paralysed, makes no sense to me. always thought paralysed meant feck all movement, yet I can talk, you might figure that one.
Eating difficulties may arise because of problems with biting, chewing and swallowing. There may be poor growth due to inadequate nutrition. If the child has difficulty closing his mouth he may have a problem with drooling. - Again this is relevant I cut up my food and have mastered the art of chewing, oh I may need a hand to cut up my grub, I do gag at times, usually brushing my teeth, not very sexy.
Epilepsy occurs in about thirty to fifty percent of children with cerebral palsy. – I was one of those fifty percent, but grew out of it and am not on any medication at all.
Right that’s kind of the scientific way CP effects me. Now the social way, yes nearly all people if not all people with all disabilities tend to like to have a social life and be treated with general manners and respect.
I personally enjoy good conversation, a few drinks, dancing, shopping, DIY, photography to mention but a few. As I am Irish, and live in Ireland a huge part of our culture is socialise in pubs and clubs. This can be difficult at times, there are very few places completely accessible. I also find it difficult in Cork more so to find friends who will actually meet other places then a pub. It can be difficult to socialise. Before going out I have considerations to take into account. If going out on my own the venue I choose must have an accessible toilet, if it doesn’t it means I am either coming from somewhere that had and am only having a drink before hitting the road, or I am going somewhere else I can access a loo. I do have to say I feel somewhat lucky that I can hop out of my chair and walk with the lend of an arm to access events, especially within the gay community which are up stairs. Even though I don’t agree with the lack of thought and funding which causes inaccessibility, where possible, I try not to isolate myself any more than I have to, so I walk up the stairs of venues and sometimes just have one drink for the night so the toilet isn’t required. On the other hand.a woman in her 30’s living in Ireland should not have to do that, should she? Should anyone?
For quite some time it has bugged me how disability has been ignored, not discussed or even asked about. Also how disability is withing the LGBT Community, a minority within a minority. I feel a lot of people, in general, see me and jump to their own conclusions about what they think they see as opposed to asking if I would having a conversation about it.
I am sure a lot of people, from every walk of life can relate to being out and about and someone asking “how are you”? What gets me is before you can answer that person, they are gone! I mean if you are not going to hang around for the answer, why ask? Imagine going into a shop and being asked “how may I help you? So then you start asking for what you want, and halfway through the shop assistant goes on their lunch!
So I have decided, in the age of the internet this blog entry is going to be about my disability.
First off I should state my obvious disability is completely a physical one and is called “Cerebral Palsy”, CP for short. I will write how CP affects me as there are many different types of it.
CP is not a disease or an illness but a physical impairment affecting muscle control and movement. A person/child with cerebral palsy has difficulty controlling movement and posture; they may have problems walking, talking, eating and playing.
I have nearly all my movements under control, my posture is great, fantastic really. I learned to walk when I was 9 and it improves with practice, I only use the wheelchair when I have to like going out and about on my own I have two, a powered one, johnny 5 and the manual, the batmobele.
Cerebral palsy does not get worse over time. There are different causes of cp, the majority of cases are due to negligence just before, during or shortly after birth. I have CP because I wasn't delivered fast enough and could have been and the cord was around my neck 3 times, so there was lack of oxygen to my brain.
Children with CP have damage to the part of the brain that controls muscle tone and movement. Muscle tone may be too tight (hypertonia) or too loose (hypotonia) or mixed. Infants with CP are often slow to reach developmental milestones such as learning to roll over, sitting, crawling and walking.
The type of cerebral palsy I have is Dyskinesia. This refers to involuntary writhing-like movements that cause severe disability. It is also called choreiform or athetoid movement. Now I don’t consider my disability severe, but according to the medics I shouldn’t be as good as I actually am. Muscle tone in people with dyskinesia is variable i.e. too tight at times and too loose at other times. They have trouble sitting upright or walking. - apparently I have this one. I have involuntary movements but they are practically always under control, although at times my right hand/arm goes crazy. Oh and I am a professional dancer too. |
Others things associated with Cerebral Palsy are |
Talking is difficult if control of the muscles in the lips, jaw, tongue and other muscles involved in speech is affected. - apparently my lower jaw is paralysed, makes no sense to me. always thought paralysed meant feck all movement, yet I can talk, you might figure that one.
Eating difficulties may arise because of problems with biting, chewing and swallowing. There may be poor growth due to inadequate nutrition. If the child has difficulty closing his mouth he may have a problem with drooling. - Again this is relevant I cut up my food and have mastered the art of chewing, oh I may need a hand to cut up my grub, I do gag at times, usually brushing my teeth, not very sexy.
Epilepsy occurs in about thirty to fifty percent of children with cerebral palsy. – I was one of those fifty percent, but grew out of it and am not on any medication at all.
Right that’s kind of the scientific way CP effects me. Now the social way, yes nearly all people if not all people with all disabilities tend to like to have a social life and be treated with general manners and respect.
I personally enjoy good conversation, a few drinks, dancing, shopping, DIY, photography to mention but a few. As I am Irish, and live in Ireland a huge part of our culture is socialise in pubs and clubs. This can be difficult at times, there are very few places completely accessible. I also find it difficult in Cork more so to find friends who will actually meet other places then a pub. It can be difficult to socialise. Before going out I have considerations to take into account. If going out on my own the venue I choose must have an accessible toilet, if it doesn’t it means I am either coming from somewhere that had and am only having a drink before hitting the road, or I am going somewhere else I can access a loo. I do have to say I feel somewhat lucky that I can hop out of my chair and walk with the lend of an arm to access events, especially within the gay community which are up stairs. Even though I don’t agree with the lack of thought and funding which causes inaccessibility, where possible, I try not to isolate myself any more than I have to, so I walk up the stairs of venues and sometimes just have one drink for the night so the toilet isn’t required. On the other hand.a woman in her 30’s living in Ireland should not have to do that, should she? Should anyone?
Labels:
Cerebrail Palsy,
Cork,
disability,
Gay,
Ireland,
Lesbian
Sunday, October 2, 2011
Shock, Legend, John Broz, Cork,
I started this blog entry in early October and have struggled to write it. It has been the hardest piece I have ever chosen to write.
Friday morning September 30th 2011 I woke up early, I was upset about something so wasn't sleeping great, got sorted, came down stairs, started putting a shopping list together and checked my work facebook, I saw a post from a friend on my work page, "We have lost a true legend today...RIP John Broz..u will never be forgotten xxxx". I replied with "what" I mean was it a mistake, a rumour? We all know what the Irish are like for Chinese whispers, never mind the gays in Ireland. A post then appeared in response to my question of disbelief saying "he passed away this morning Mary".
I texted a very good friend, Aine and told her.; The shock set in straight away and I went up shopping like a zobbie, I didn't want to believe it, I couldn't cause if I did I would have broke down. In my head it was still a mistake, I mean John Broz, a awesome dj and complete legend who lights up any room, full of life and amazing energy, no way had he past. I had seen and chatted with himself and Angi the weekend before.
I went about my business and went up to my local shopping centre. As I was walking around, trying to focus I was thinking, how is everybody so normal, a legend has left us. I got my shopping done, came home and read it again, half expecting to find out it was a mistake. It wasn't. Tributes were filling up facebook. I rang my other half (a best mate of 16 years) in Waterford and broke down on the phone. Then I started contacting people, who may not have heard, the tears wouldn't stop. The other half and her girlfriend came to Cork from Waterford to stay with me. Earlier when I heard, one friend came into my head, Christy, a guy I met about 9 years previous in Cork, a guy who has become an amazing friend, a guy who was always at a Broz gig and who loved, appreciated and enjoyed John's friendship, company, presence and skill as much as I. Christy had gone away the day before and I couldn't get in contact with him. Myself and Christy have a mutual friend, who I met at a Broz gig at Cork Pride 2010, Joby. I text him, as I couldn't speak on the phone and told him and shock set in with him too. Alan, another mutual friend of Christy's facebooked me and asked for his black jacket for John's funeral. I couldn't get my head around it, we shouldn't have had a funeral to go, I was hoping it was one very sick prank.
The girls arrived down to Cork after 4 on the Friday and stayed with me until the Sunday. The weekend just past, I was still in shock, I wasn't hearing anything about arrangements, the tributes were being posted on youtube and facebook. I was very hurt actually, I was hearing nothing from anybody in Cork so eventually I texted an individual to find out if they knew anything regarding arrangements for John and I got a really cold response back and told it would be posted up online and to check facebook. Which was the logical thing, facebook is the way to let a lot of people know something all at once, but it hurt. The girls went home Sunday and I called to some friends house and got my ass whipped playing connect 4. My friend came back to mine and stayed over, I just couldn't stay on my own, nor did I want to, I will still in shock. I felt so isolated from the community and felt so lucky to have support from Aine, Garf, Ally, Joby, Gwen and Mark.
The next day just seemed to pass and soon it was time to go to the church. It was so hard, the one person who would have probably been with me through it all was away, and could not be reached. It did help that a good friend was coming from Dublin, Joby. It was so odd getting ready, I wore a pink shirt with coloured hearts and jeans as well as a pride ribbon on my jacket and a pride wrist band, a friend called and we went to the church and waited there for people and John to arrive. I was sitting in the car and burst out laughing and said "only john could fill a church with gays". We got out of the car, and waited at the church, people started to arrive, then the cars and John with a rainbow pride flag draped over him, Joby arrived then, I was never so happy to see someone, someone to share the tears and laughter with, someone I met at a Broz gig and someone who just wrapped his arms around me and was a great support. We went into the church to hear 'Somewhere Over The Rainbow' and see the alter lighting change all the colours of the rainbow. The priest welcomed John and the rest of us to the church, he was so respectful of the pride flag and what it represented as well as John, Angie and their family and friends. Songs were sang and words spoke, condolences were made too and the shock and upset was very present. After the service I went up to Angi and was introduced to the Broz family, I was expecting to hear John say 'hey girl, thanks for coming, it's great to see ya', but didn't.
Joby came back to mine, he was staying over and another friend called around, Mark, I know Mark as long I am in Cork. We talked and remembered, laughed and cried. I know I wondered how I would get through the next day. Tuesday morning came all too quickly, I couldn't comprehend I was getting ready for John Broz's funeral let alone ordering a taxi to go to it. So many nights I used to come back to Cork after being home for the weekend, grab a bite to eat, figure out what to wear and head into town with friends to dance the night away to the legend John Broz.
We got the taxi up, stood outside for a bit and then went in and took our seats, it was so hard, there we babies crying and laughing occasionally, reminding us about life, John's fellow band members sang, the readings were beautiful, the priest invited whoever wanted communion to come up, he quoted the Pointer Sisters again, John's sister spoke the most beautiful words to her brother, Whitney Houston was played at which point I expected John to be djing on the alter, the entire service was beautiful, very Broz like. I sat there, in shock, the tears flowed, wouldn't stop.
I went back to LinC for a cuppa and the others joined, then Joby had to head back to the big smoke, it meant to much to me to have his understanding and support. Gwen, Mark and I went for a bite to eat and then over to the Pav, anytime I had been in the Pav it was to a Broz gig./ Angi and the rest of John's family arrived shortly after along with friends and the place was full. Full of stories, music, laughter and sorrow. Full of John's type of music and tracks of his amazing voice. I met more of his family and friends, shared stories and disbelief before much later heading to Loafers for one before heading home.
Life is not the same, never will be, it is always the beautiful people that are taken before their time. At his benefit night a month later, somebody sang Firework by Katy Perry, that song is really one way of billions to describe John. In November John was awarded and remembered at the Rebel Awards 2011 in Cork where his family received Lifetime Achievement Award. You see, John was one of those people who had a sense of magic about him. He would walk into a room and without saying a word, would light it up, his colours would burst. He had time for everyone and only see good in people. Every night John was out or playing, was an awesome night. Any day you met John or Angi randomly in the street you would find an extra spring in your step and an uncontrollable smile in your soul and on your face.
I can feel a separate post coming on about John himself.
Friday morning September 30th 2011 I woke up early, I was upset about something so wasn't sleeping great, got sorted, came down stairs, started putting a shopping list together and checked my work facebook, I saw a post from a friend on my work page, "We have lost a true legend today...RIP John Broz..u will never be forgotten xxxx". I replied with "what" I mean was it a mistake, a rumour? We all know what the Irish are like for Chinese whispers, never mind the gays in Ireland. A post then appeared in response to my question of disbelief saying "he passed away this morning Mary".
I texted a very good friend, Aine and told her.; The shock set in straight away and I went up shopping like a zobbie, I didn't want to believe it, I couldn't cause if I did I would have broke down. In my head it was still a mistake, I mean John Broz, a awesome dj and complete legend who lights up any room, full of life and amazing energy, no way had he past. I had seen and chatted with himself and Angi the weekend before.
I went about my business and went up to my local shopping centre. As I was walking around, trying to focus I was thinking, how is everybody so normal, a legend has left us. I got my shopping done, came home and read it again, half expecting to find out it was a mistake. It wasn't. Tributes were filling up facebook. I rang my other half (a best mate of 16 years) in Waterford and broke down on the phone. Then I started contacting people, who may not have heard, the tears wouldn't stop. The other half and her girlfriend came to Cork from Waterford to stay with me. Earlier when I heard, one friend came into my head, Christy, a guy I met about 9 years previous in Cork, a guy who has become an amazing friend, a guy who was always at a Broz gig and who loved, appreciated and enjoyed John's friendship, company, presence and skill as much as I. Christy had gone away the day before and I couldn't get in contact with him. Myself and Christy have a mutual friend, who I met at a Broz gig at Cork Pride 2010, Joby. I text him, as I couldn't speak on the phone and told him and shock set in with him too. Alan, another mutual friend of Christy's facebooked me and asked for his black jacket for John's funeral. I couldn't get my head around it, we shouldn't have had a funeral to go, I was hoping it was one very sick prank.
The girls arrived down to Cork after 4 on the Friday and stayed with me until the Sunday. The weekend just past, I was still in shock, I wasn't hearing anything about arrangements, the tributes were being posted on youtube and facebook. I was very hurt actually, I was hearing nothing from anybody in Cork so eventually I texted an individual to find out if they knew anything regarding arrangements for John and I got a really cold response back and told it would be posted up online and to check facebook. Which was the logical thing, facebook is the way to let a lot of people know something all at once, but it hurt. The girls went home Sunday and I called to some friends house and got my ass whipped playing connect 4. My friend came back to mine and stayed over, I just couldn't stay on my own, nor did I want to, I will still in shock. I felt so isolated from the community and felt so lucky to have support from Aine, Garf, Ally, Joby, Gwen and Mark.
The next day just seemed to pass and soon it was time to go to the church. It was so hard, the one person who would have probably been with me through it all was away, and could not be reached. It did help that a good friend was coming from Dublin, Joby. It was so odd getting ready, I wore a pink shirt with coloured hearts and jeans as well as a pride ribbon on my jacket and a pride wrist band, a friend called and we went to the church and waited there for people and John to arrive. I was sitting in the car and burst out laughing and said "only john could fill a church with gays". We got out of the car, and waited at the church, people started to arrive, then the cars and John with a rainbow pride flag draped over him, Joby arrived then, I was never so happy to see someone, someone to share the tears and laughter with, someone I met at a Broz gig and someone who just wrapped his arms around me and was a great support. We went into the church to hear 'Somewhere Over The Rainbow' and see the alter lighting change all the colours of the rainbow. The priest welcomed John and the rest of us to the church, he was so respectful of the pride flag and what it represented as well as John, Angie and their family and friends. Songs were sang and words spoke, condolences were made too and the shock and upset was very present. After the service I went up to Angi and was introduced to the Broz family, I was expecting to hear John say 'hey girl, thanks for coming, it's great to see ya', but didn't.
Joby came back to mine, he was staying over and another friend called around, Mark, I know Mark as long I am in Cork. We talked and remembered, laughed and cried. I know I wondered how I would get through the next day. Tuesday morning came all too quickly, I couldn't comprehend I was getting ready for John Broz's funeral let alone ordering a taxi to go to it. So many nights I used to come back to Cork after being home for the weekend, grab a bite to eat, figure out what to wear and head into town with friends to dance the night away to the legend John Broz.
We got the taxi up, stood outside for a bit and then went in and took our seats, it was so hard, there we babies crying and laughing occasionally, reminding us about life, John's fellow band members sang, the readings were beautiful, the priest invited whoever wanted communion to come up, he quoted the Pointer Sisters again, John's sister spoke the most beautiful words to her brother, Whitney Houston was played at which point I expected John to be djing on the alter, the entire service was beautiful, very Broz like. I sat there, in shock, the tears flowed, wouldn't stop.
I went back to LinC for a cuppa and the others joined, then Joby had to head back to the big smoke, it meant to much to me to have his understanding and support. Gwen, Mark and I went for a bite to eat and then over to the Pav, anytime I had been in the Pav it was to a Broz gig./ Angi and the rest of John's family arrived shortly after along with friends and the place was full. Full of stories, music, laughter and sorrow. Full of John's type of music and tracks of his amazing voice. I met more of his family and friends, shared stories and disbelief before much later heading to Loafers for one before heading home.
Life is not the same, never will be, it is always the beautiful people that are taken before their time. At his benefit night a month later, somebody sang Firework by Katy Perry, that song is really one way of billions to describe John. In November John was awarded and remembered at the Rebel Awards 2011 in Cork where his family received Lifetime Achievement Award. You see, John was one of those people who had a sense of magic about him. He would walk into a room and without saying a word, would light it up, his colours would burst. He had time for everyone and only see good in people. Every night John was out or playing, was an awesome night. Any day you met John or Angi randomly in the street you would find an extra spring in your step and an uncontrollable smile in your soul and on your face.
I can feel a separate post coming on about John himself.
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