Informing friends about TS does have some similarities to informing work colleagues in that you don’t wish to be pitied or discounted as a result of telling the other person. However with close friends you hope that you can have a relationship where you can share important parts of your life. You also hope that they will give you the understanding and support you need.
This is particularly important when you are younger. Sometimes friends may not be as sensitive or understanding as you hope. Sometimes it is not appropriate to tell the friend. However it is important that a girl with TS is allowed to inform others. I was made to feel like I had no right to tell others. My mother however told her friends, and on one occasion a family friend told her two daughters in order to make them behave nicely towards me! Not good.
There have only been a handful of non TS friends I have told about my TS. Two of these were friends I was close to at school. There were also a couple of friends at university that I told.
I have another close friend I have told, although we don’t really discuss it. She has always been supportive when we have done.
I know of several women with TS who have close friendships with people who are aware of their TS. Interestingly in one case a close friendship developed with another woman who had a serious health condition.
It would be great to have a non- TS friend who I could discuss TS with regularly with. It is not a failure of any friendship that this is the case but it is indicative of the fact that most people who do not have TS do not appreciate the impact it has in your life. However perhaps the fact that it is a non-issue for friends is a good thing as they see you as yourself not as a woman with TS.
I have to say that my friendships with other TS women mean so much to me not just because of the things I can tell them but because of the things I DON’T have to tell them.
Saturday, 29 May 2010
29.Disclosure pt.1- the work place
The issue of telling others about Turners Syndrome is a vexed one. It can be difficult to know who to tell, what to tell them and when to tell them.
I will first look at the issue of telling people in the workplace.
The issue of disclosure in the work place works on several level
Firstly there is the responsibility to inform your employer. Legally there is an obligation to inform on any health form/job application. However this does not necessarily mean that the colleagues you work with need to be informed. I have never been asked to go for a medical when I have been offered a post so I do not know what the procedure would be in these cases. I know that many women with TS work in caring professions such as nursing where this may be necessary.
Then there is the issue of whether you tell your immediate line manager.
I had a very bad experience with the one line manager who I told. I have to say that the description I gave him was not a helpful one as it was highly negative in its portrayal of TS. I wanted him to know that I would respond better to being line managed in a particular manner and that I would require some understanding.
However the positive side of my experience is that I have not felt the need to tell any of my other line managers. My TS does not affect my ability to do my work and my treatment has a minimal impact in terms of having to take time off for doctor’s appointments.
A large part of why I have not told my other line managers is firstly because I do not want them thinking that I am less capable. I also do not want them to automatically assume that I will have certain issues that women with TS have such as the spacial and non-verbal communication issues. I most certainly do not want them viewing me in a particular manner because I am infertile. The descriptions of Turners syndrome in medical dictionaries and what press coverage there has been of TS are not necessarily very flattering!
I also do not want to use TS as an excuse for either poor performance or poor behaviour.
From the experiences of other women with TS I know that I have heard about, it is better not to inform your immediate line manager, particularly when there are difficulties in the relationship. It will not help resolve these difficulties and may exacerbate them.
Thirdly there is the issue of work colleagues who do not manage you. I have only told two work colleagues and they have been colleagues I have been particularly friendly with. In one case this was actually because I wanted the opinion of the colleague who knew Gabriel what his reaction may be if I told him.
I have worked in my current job for six years and the people I work with have got to know me fairy well. They know that I go for hospital appointments. They are certainly aware that I have coeliac disease and hypothyroidism. They also see me as someone who gets ill fairly regularly. I have given clues that I have a long term condition that is the cause of my other health issues.
All in all, as far as the work place is involved I am of the opinion ‘less is more'.
I will first look at the issue of telling people in the workplace.
The issue of disclosure in the work place works on several level
Firstly there is the responsibility to inform your employer. Legally there is an obligation to inform on any health form/job application. However this does not necessarily mean that the colleagues you work with need to be informed. I have never been asked to go for a medical when I have been offered a post so I do not know what the procedure would be in these cases. I know that many women with TS work in caring professions such as nursing where this may be necessary.
Then there is the issue of whether you tell your immediate line manager.
I had a very bad experience with the one line manager who I told. I have to say that the description I gave him was not a helpful one as it was highly negative in its portrayal of TS. I wanted him to know that I would respond better to being line managed in a particular manner and that I would require some understanding.
However the positive side of my experience is that I have not felt the need to tell any of my other line managers. My TS does not affect my ability to do my work and my treatment has a minimal impact in terms of having to take time off for doctor’s appointments.
A large part of why I have not told my other line managers is firstly because I do not want them thinking that I am less capable. I also do not want them to automatically assume that I will have certain issues that women with TS have such as the spacial and non-verbal communication issues. I most certainly do not want them viewing me in a particular manner because I am infertile. The descriptions of Turners syndrome in medical dictionaries and what press coverage there has been of TS are not necessarily very flattering!
I also do not want to use TS as an excuse for either poor performance or poor behaviour.
From the experiences of other women with TS I know that I have heard about, it is better not to inform your immediate line manager, particularly when there are difficulties in the relationship. It will not help resolve these difficulties and may exacerbate them.
Thirdly there is the issue of work colleagues who do not manage you. I have only told two work colleagues and they have been colleagues I have been particularly friendly with. In one case this was actually because I wanted the opinion of the colleague who knew Gabriel what his reaction may be if I told him.
I have worked in my current job for six years and the people I work with have got to know me fairy well. They know that I go for hospital appointments. They are certainly aware that I have coeliac disease and hypothyroidism. They also see me as someone who gets ill fairly regularly. I have given clues that I have a long term condition that is the cause of my other health issues.
All in all, as far as the work place is involved I am of the opinion ‘less is more'.
Saturday, 15 May 2010
28. my favourite Stevie Wonder Tracks in honour of his Sixieth birthday
1. Happier than the morning sun
2. They won’t go when I go
3.Ordinary pain
4. For once in my life
5. Living for the city
6.Black man (I learnt more about US history form this song than a stack of textbooks)
7. Blame it on the sun
8. Golden lady
9. Creepin
10. Pastime paradise
11. Love a go-go
12. Hey love
13. until you come back to me
14. Never dream you’d leave in summer
15.You haven’t done nothing (with Jackson 5!)
Shout out to ‘It’s a shame’ (Spinners), Tears of a clown (Smokey Robinson and the miracles), Buttercup (Carl Anderson)
And ‘I don’t know why I love you’ especially for my Dad!
2. They won’t go when I go
3.Ordinary pain
4. For once in my life
5. Living for the city
6.Black man (I learnt more about US history form this song than a stack of textbooks)
7. Blame it on the sun
8. Golden lady
9. Creepin
10. Pastime paradise
11. Love a go-go
12. Hey love
13. until you come back to me
14. Never dream you’d leave in summer
15.You haven’t done nothing (with Jackson 5!)
Shout out to ‘It’s a shame’ (Spinners), Tears of a clown (Smokey Robinson and the miracles), Buttercup (Carl Anderson)
And ‘I don’t know why I love you’ especially for my Dad!
27. my favourite Gilberto Gil tracks
1. Refazenda
2. Toda menina Baiana
3. Domingo no parque
4. Geleia Geral
5. Aquele Abraco (‘Gilberto Gil’ 1969 version)
6. Mar de Copacabana
7. Realce
8. Flora
9. Tempo Rei (‘Gil Luminoso’ version 2006)
10. Ela
Shout out to the awesome’ Panis e circuses’ by Os Mutantes which Gilberto co-wrote with Caetano Veloso and which he recently performed live in an acoustic version.
2. Toda menina Baiana
3. Domingo no parque
4. Geleia Geral
5. Aquele Abraco (‘Gilberto Gil’ 1969 version)
6. Mar de Copacabana
7. Realce
8. Flora
9. Tempo Rei (‘Gil Luminoso’ version 2006)
10. Ela
Shout out to the awesome’ Panis e circuses’ by Os Mutantes which Gilberto co-wrote with Caetano Veloso and which he recently performed live in an acoustic version.
26. June 1942- The Man from Salvador
Gilberto Gil, along with his good friend and sometimes collaborator Caetano Veloso managed to fit being a TV talent show contestant and a political prisoner onto his CV in the same year. That itself is an achievement (and BTW he required stitches- after appearing in the TV talent show). Mind you that was in 1968 – a bit of a crazy year in Gil’s long and esteemed career.
Gilberto’s lyrics are witty and intelligent and discuss issues such as the role of the artist in society and African-Brazilian identity. Check Geleia Geral for a seriously funky exploration of Brazilian society and it’s inequalities. He has collaborated with peers such as Jorge Ben Jor and Chico Buarque (check the footage of the Brazilian military police cutting Buarques microphone while they were performing Buarques anti censorship classic ‘ Chalice) written songs for the Elis Regina and Gal Costa and been covered by many of his compatriots not least Sergio Mendes. But his most losest musical relationship is with Caetano Veloso. They were guiding lights of the Tropicalia movement which brought western rock to the Brazilian music and also helped show that other regions of Brazil (namely Bahia) had something to offer Brazilian music. The movement also challenged Brazilian notions of gender, race and sex roles. What is amazing that this was done in the very populist arena of TV talent shows! Gil and Veloso broke through in the 1967 Rede record festival. On his song ‘Domingo No parque’ Gil was joined by the group Os Mutantes. Despite its happy tune it is about the aftermath of a crime of passion. Check out the two versions of ‘procissão’ (the first sweetly acoustic, the next a manic piece of psychedelic rock courtesy of Os Mutantes) to witness what dramatic changes Tropicalia and its adherents had on Brazilian music.
But there is so much more to Gil’s career than Tropicalia. Gil has incorporated Soul, Funk and hip hop along with other genres into his music and championed obscure Brazilian musical In particular Gil got interested in Reggae while forcibly exiled in Notting Hill, London in the early 1970’s. He brought his interest with him when he returned to Brazil. He also supported the afoxe group Filhos de Gandhi.
Gil has been at the forefront of the Black consciousness movement in Brazil since the 1970’s, along with Jorge Ben Jor and continues to explore the links between Brazil and African and their peoples. He is also a proud resident of Bahia (a largely African Brazilian state). His paean to its womenfolk ‘Todo Menina Baiana’ is a song I remember with great fondness from my childhood (thanks to the mighty Peter Young)
One of Gils’ most beloved songs is Aquele Abraco which he wrote as a farewell to Brazil when he knew he was going to be exiled. It is filled with Joy and love rather than sadness and bitterness. It is a song which deliberately works best live with an audience response. Ironically It was used as a theme song for the successfully Rio de Janeiro Olympic bid!
Gilberto served as Minister of Culture under Luiz Inácio Lula da Silva between 2003-2008.
He still tours regularly and I have had the pleasure of seeing him twice in concert in the last two years (and will do again soon) He is able to play a set of over two hours more or less by himself (with his son and a Cellist accompanying him)and keep the audience completely enthralled. He still plays a .set several hours long at the Salvador Carnival! He is also a rather fine looking man!
Gilbert Gil has a great website at http://www.gilbertogil.com.br/ where most of his recorded output is available for listening to. He has written and recorded hundreds of song and you will be richly rewarded by investigating his output.
Gilberto’s lyrics are witty and intelligent and discuss issues such as the role of the artist in society and African-Brazilian identity. Check Geleia Geral for a seriously funky exploration of Brazilian society and it’s inequalities. He has collaborated with peers such as Jorge Ben Jor and Chico Buarque (check the footage of the Brazilian military police cutting Buarques microphone while they were performing Buarques anti censorship classic ‘ Chalice) written songs for the Elis Regina and Gal Costa and been covered by many of his compatriots not least Sergio Mendes. But his most losest musical relationship is with Caetano Veloso. They were guiding lights of the Tropicalia movement which brought western rock to the Brazilian music and also helped show that other regions of Brazil (namely Bahia) had something to offer Brazilian music. The movement also challenged Brazilian notions of gender, race and sex roles. What is amazing that this was done in the very populist arena of TV talent shows! Gil and Veloso broke through in the 1967 Rede record festival. On his song ‘Domingo No parque’ Gil was joined by the group Os Mutantes. Despite its happy tune it is about the aftermath of a crime of passion. Check out the two versions of ‘procissão’ (the first sweetly acoustic, the next a manic piece of psychedelic rock courtesy of Os Mutantes) to witness what dramatic changes Tropicalia and its adherents had on Brazilian music.
But there is so much more to Gil’s career than Tropicalia. Gil has incorporated Soul, Funk and hip hop along with other genres into his music and championed obscure Brazilian musical In particular Gil got interested in Reggae while forcibly exiled in Notting Hill, London in the early 1970’s. He brought his interest with him when he returned to Brazil. He also supported the afoxe group Filhos de Gandhi.
Gil has been at the forefront of the Black consciousness movement in Brazil since the 1970’s, along with Jorge Ben Jor and continues to explore the links between Brazil and African and their peoples. He is also a proud resident of Bahia (a largely African Brazilian state). His paean to its womenfolk ‘Todo Menina Baiana’ is a song I remember with great fondness from my childhood (thanks to the mighty Peter Young)
One of Gils’ most beloved songs is Aquele Abraco which he wrote as a farewell to Brazil when he knew he was going to be exiled. It is filled with Joy and love rather than sadness and bitterness. It is a song which deliberately works best live with an audience response. Ironically It was used as a theme song for the successfully Rio de Janeiro Olympic bid!
Gilberto served as Minister of Culture under Luiz Inácio Lula da Silva between 2003-2008.
He still tours regularly and I have had the pleasure of seeing him twice in concert in the last two years (and will do again soon) He is able to play a set of over two hours more or less by himself (with his son and a Cellist accompanying him)and keep the audience completely enthralled. He still plays a .set several hours long at the Salvador Carnival! He is also a rather fine looking man!
Gilbert Gil has a great website at http://www.gilbertogil.com.br/ where most of his recorded output is available for listening to. He has written and recorded hundreds of song and you will be richly rewarded by investigating his output.
Sunday, 9 May 2010
25: A walk in the Garden of Eden
I have just come back from a trip to the village outside Dublin where I lived between the ages of seven and ten. Although I have visited the village several times in the last four years this is the first time a thought hit me.
As it said in an earlier entry it was soon after my family returned from Dublin to Ireland that I was diagnosed with Turners Syndrome. It was traumatic enough to be uprooted from a quiet Dublin village where you knew most people (and certainly most of th children of your age), could get to the seaside in a few minutes in the car and go walking down country lanes which were a couple of minutes away from your home to a London suburb, where you knew few of your neighbours, and a school with some decidedly tough girls! I recall writing a lot of short stories at school which were set in this village at the time as a way of remembering it.
There were a number of issues around my education when I came to London. Firstly the headmistress in the primary school I went into did not know what level I would be at educationally so she decided to classify me as remedial. I was bullied by the teacher in the class I went into, possibly because of this classification. When I went to secondary school it became very apparent that I was not remedial. This meant that I never fitted in with the class I was put in that first year and that when I was held back to do the first year of secondary school again the friends I had made in primary school were a year above me.
Being classified as remedial had a considerable impact on my self esteem and confidence as was the first of several experiences of being underestimated by others.
However another issue was that the girls in London were more somewhat more mature than the girls I was at school with in Dublin. My Mum believes I missed out a critical couple of years of social development. This may be why I never fully felt like I fitted in at school and why I still find it difficult to fit in with my peers.
Of course both these issues have nothing to do with TS, but they contributed developing issues of how I viewed myself and how I related to my peers. However being diagnosed with TS was the thing which caused the biggest breach for me from my peers.
As I was walking around the village a couple of days ago, it struck me that not one moment of my time there was affected by TS. As far as anyone knew I had the same possibilities in life as my peers. I was a girl, not a girl with TS. How others, particularly my parents viewed me was not yet altered.
Indeed it struck me that for me this village represented an age of innocence and grace. I had not yet suffered ‘the fall’. I had not yet gained some hard earned knowledge.
Perhaps this was part of the reason why it took me 21 years to return to the village and why I enjoy returning there now.
However I cannot help but be grateful that I was diagnosed soon after my return to London. However difficult the knowledge has been, it has meant that I got the medical treatment that I needed and that I was able to integrate my infertility into my plans for my future.
Returning to the village also reminded me how much my parents care about me and how much they have provided me with throughout my life.
As it said in an earlier entry it was soon after my family returned from Dublin to Ireland that I was diagnosed with Turners Syndrome. It was traumatic enough to be uprooted from a quiet Dublin village where you knew most people (and certainly most of th children of your age), could get to the seaside in a few minutes in the car and go walking down country lanes which were a couple of minutes away from your home to a London suburb, where you knew few of your neighbours, and a school with some decidedly tough girls! I recall writing a lot of short stories at school which were set in this village at the time as a way of remembering it.
There were a number of issues around my education when I came to London. Firstly the headmistress in the primary school I went into did not know what level I would be at educationally so she decided to classify me as remedial. I was bullied by the teacher in the class I went into, possibly because of this classification. When I went to secondary school it became very apparent that I was not remedial. This meant that I never fitted in with the class I was put in that first year and that when I was held back to do the first year of secondary school again the friends I had made in primary school were a year above me.
Being classified as remedial had a considerable impact on my self esteem and confidence as was the first of several experiences of being underestimated by others.
However another issue was that the girls in London were more somewhat more mature than the girls I was at school with in Dublin. My Mum believes I missed out a critical couple of years of social development. This may be why I never fully felt like I fitted in at school and why I still find it difficult to fit in with my peers.
Of course both these issues have nothing to do with TS, but they contributed developing issues of how I viewed myself and how I related to my peers. However being diagnosed with TS was the thing which caused the biggest breach for me from my peers.
As I was walking around the village a couple of days ago, it struck me that not one moment of my time there was affected by TS. As far as anyone knew I had the same possibilities in life as my peers. I was a girl, not a girl with TS. How others, particularly my parents viewed me was not yet altered.
Indeed it struck me that for me this village represented an age of innocence and grace. I had not yet suffered ‘the fall’. I had not yet gained some hard earned knowledge.
Perhaps this was part of the reason why it took me 21 years to return to the village and why I enjoy returning there now.
However I cannot help but be grateful that I was diagnosed soon after my return to London. However difficult the knowledge has been, it has meant that I got the medical treatment that I needed and that I was able to integrate my infertility into my plans for my future.
Returning to the village also reminded me how much my parents care about me and how much they have provided me with throughout my life.
Saturday, 8 May 2010
24: Meeting Lucy again..
In the spring of 1997 the CGF send me the contact details for a young woman with TS who lived in Surrey. She was the same age as me. She lived a short train journey away so I telephoned her to meet up.
I was extremely excited about this meeting Lucy. It was great to have another woman with TS so near to where I lived who I could meet up with regularly.
One Saturday I waited outside a train station looking for a lady who looked how Lucy described herself. I saw a woman who did and we introduced ourselves. We went for a coffee and started telling each other about our lives.
It was a lovely sunny day so we sat out in a park where we ate the sandwiches which we had brought for lunch. I was sure that it was Lucy that I had meet when I was about 12. I asked her but she was not sure. We met up with my sister who was then working near where Lucy lived.
When we spoke again that evening Lucy confirmed that we had met and talked about the picture her mum took of us.
Over that summer we exchanged many letters and telephone calls. We had a lot to discuss when the David Skuse controversy broke that summer (more of which anon!). I sent Lucy copies of the press coverage, some of which amused her considerably. We agreed to go to the Turner’s Syndrome international conference in Coventry in July that year.
Of all the friends I have with TS my friendship with Lucy is the most significant and the one which has changed my life. She has encouraged me in so many ways. I am so grateful that she has been part of my live for the past thirteen years.
I was extremely excited about this meeting Lucy. It was great to have another woman with TS so near to where I lived who I could meet up with regularly.
One Saturday I waited outside a train station looking for a lady who looked how Lucy described herself. I saw a woman who did and we introduced ourselves. We went for a coffee and started telling each other about our lives.
It was a lovely sunny day so we sat out in a park where we ate the sandwiches which we had brought for lunch. I was sure that it was Lucy that I had meet when I was about 12. I asked her but she was not sure. We met up with my sister who was then working near where Lucy lived.
When we spoke again that evening Lucy confirmed that we had met and talked about the picture her mum took of us.
Over that summer we exchanged many letters and telephone calls. We had a lot to discuss when the David Skuse controversy broke that summer (more of which anon!). I sent Lucy copies of the press coverage, some of which amused her considerably. We agreed to go to the Turner’s Syndrome international conference in Coventry in July that year.
Of all the friends I have with TS my friendship with Lucy is the most significant and the one which has changed my life. She has encouraged me in so many ways. I am so grateful that she has been part of my live for the past thirteen years.
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