23: My first TS Conference & my first TS Friendship

About 18 years ago while I was in my first year at university (now there is a scary though!) I got a clipping about the Child Growth Foundation (CGF) under whom the UK Turners syndrome support group was run at the time. I was sent this clipping by the aunt who was in the room when my mum told me the full extent of TS.

I got in contact and found out that there was to be a conference in Birmingham where I was studying. I did not have the money to attend the entire conference but the CGF was happy for me to come along and attend some of the sessions on the Saturday.

I was supposed to be on a bonding weekend for a University Society that I was on at the time but made my excuses and went off to the conference.

It was a fairly emotional experience being around so many other women with TS. I had been to a CGF conference with my parents when I was about 12 but not interacted with anyone else. The last time I had met someone with TS was when I met Lucy when I was eleven- I was now twenty years old.

There had recently been a controversy in the UK about the potential use of eggs from aborted foetuses. The woman who ran the TS branch of the CGF, who was the mother of a young woman with TS, was very excited by this development. She had been on a TV programme discussing this a few month earlier on Channel 4. I had actually gone on their programme ‘Right to reply’ saying it would have been better having a woman with TS speak about the issue, rather than a mother of a young girl (her daughter was six at the time). Needless to say I felt somewhat awkward when I saw her!

There was a report on the Turners’ Syndrome international conference in Canada, and recent research into TS.

It was a relief to meet the other women with TS and see how well adjusted and ‘normal’ they were.
When I got back to my student digs that evening I knew I had made the right choice how to spend the day. I had begun to find a community of other women with TS and understand I was very far from alone.
In 1995 the CGF put me in contact with a woman with TS in Edinburgh called Nula. We started writing to each other and swapped stories about our lives. I was impressed with her intelligence. After corresponding for several months we agreed to meet up in the spring of 1996 in Leicester Square with a group of other women with TS who had gone to see the musical in London. I did not go to the musical but did go for a pizza with the group. I was delighted to finally meet Nula. We chatted about the film version of ‘Trainspotting’ which had recently come out. When we went for the pizza I was sat next to a lady who covered her mouth when she spoke which I found a bit disconcerting! It was sad to see that for at least a couple of the women, their Ts had caused significant emotional issues. I would come to know some of these ladies over the next few years.

I am still regularly in contact with Nuala and occasionally go up to Edinburgh to see her. I find her a very inspiring woman. I enjoy the fact that we can discuss a wide range of issues such as veganism (Nuala is vegan and I am attempting to be as vegan as my coeliac disease will allow!), public transport policy in Edinburgh and London as well as issues around TS. My friendship with Nuala showed me other women with TS are highly intelligent, thoughtful and most significantly that I can have a friendship with other women with TS which is based on more than having TS

22: Thoughts on infertility

I will always hold that I have never really had a problem with being infertile. However what I have a major problem with is how other people’s attitudes towards infertility.

As I said in an earlier blog, I never saw becoming a mother as something that I particularly wanted for myself. When I found out that I was infertile when I was eleven it was no particularly distressing for me and I did not have to rethink what I wanted out of life. But my mother was very distressed on my behalf. I love her for this. But from the beginning it indicated that this was more of an issue for other people and what they perceived as a woman’s role in life.

In spite of the work done by the feminist movement from the 1960’s onwards, there is still an expectation that a woman will find herself a husband/partner and become a mother. We live in a culture which pushes the idea of the ‘nuclear’ family as the norm. It does not help that political parties here in the UK (especially the Conservatives) place families on a pedestal. The message comes across loud and clear that if you are not a parent you are not as valuable a member of society.

Moreover if you are not a fertile woman, you are perceived as not an attractive potential partner and any man who becomes your partner is somehow a saint for doing this.

The only time infertility gets discussed in the media or books, it is in the context of fertility treatment. People who are infertile (particularly women) are portrayed as objects of pity. IVF is pushed as a ‘cure’. It is automatically assumed that if you are infertile, you must be devastated by this and want to overcome this fact. There is little if any discussion about what it means to be infertile in this society. There is little if any discussion about actually embracing and accepting being infertile. There is little if any discussion about the effects of other people’s expectations and the pressures these bring. There is never any discussion about accepting the fact of infertility and integrating it into your life and what you can achieve. There is never any mention that some women may not have wanted to become mothers in the first place.

Choosing to do nothing about your infertility is as much a choice as going through IVF and should be appreciated as such. It should also be respected as a choice. But the idea that an infertile woman may be accepting and embracing of her condition is something that does not enter the discussion.



A woman can be many things and achieve so much without being a mother. She can create so many things. But being a mother is still seen as the definition of what it means to be a woman.

I have noticed more since members of my immediate family have had children, just how significant this attitude is. My parents make it very obvious that they value my brother who has children far more than me, not by what they say, but by their actions and the amount of time they spend with my brother’s family. I regularly feel like I am an afterthought and that any issues I may have in my life are insignificant. I have tried discussing this with my mother but she finds this a difficult thing to accept. This adds to my feelings of alienation both from my parents and family. My parents are devout Catholics from Irish backgrounds. They know a lot of single childless women but the focus on traditional family life within Catholicism may be part of why we find it difficult to understand each other. I do not mean to be hard on my parents and love them but have to acknowledge this as an issue. From conversations I have had with other women with TS it is clear that I am not alone in my experiences.

Within my group of friends with TS I have found many different attitudes towards infertility. One good friend has been profoundly marked by her infertility and how she views her opportunities in life. Another friend is beginning to understand the long term implications of being childless as she enters her fifties. Another friend has successfully gone through IVF twice. Many women in the group who have partners have gone through the processes of adoption and IVF. At least one friend shares my view that infertility does not mean the end of the world and that accepting childlessness can be a pro-active decision.

I accept and embrace my infertility. It has been part of my identity since I was eleven and has informed how I live my life.

In closing I will just say that the issue of infertility is the main reason why earlier diagnosis is important and why any girl with TS needs to be informed about this issue as early as possible. It will help her deal with all the myriad issues around infertility as early as possible and help her make the choices she needs to make.

21. My favourite Beach Boys Tracks

1. Cabinessence

2. Don’t talk, put your head on my shoulder

3. I’d love just once to see you

4. Busy doing nothing

5. I guess I just wasn’t made for these times

6. Don’t worry baby

7. Let him run wild

8. ‘Til I die

9. God only knows

10. She knows me too well


& some solo gems
1. Love and Mercy

2. Midnight’s another day

3. Melt way

4. Getting n over my head

5. Soul searching


& some gems from the vaults

Wonderful (1966/7 demo)

Wind chimes (1966/7 demo)

Surf’s up (1966/7 demo)

Don’t talk (1966 demo)

20. June 1942 (to Murry and Audree Wilson of Hawthorne, Ca.)- This is a dumb angel gazette

Brian Douglas Wilson has a special place in my heart. Although there is such sadness at the heart of
his story there is also much triumph and joy.

Many musicians set out to make the greatest album of all time- but only Brian can be said to achieved it with Pet Sounds. But he also achieved his other ambition to make people feel loved and happy with its music. Pet Sounds is the album which makes me feel good when no other does.
Much has been written about the long delayed follow up to ‘Pet Sounds’ ‘Smile’ so I don’t want to add too much. Just to say that even without being released for 37 years, the album has been more influential and discussed than most legally released albums. Indeed several acts have taken different aspects of what Brain was doing with Smile and ran with it. Heck there are several albums which were attempts to make sense of ‘Smile’s fragments or owe a lot to what Brian was doing (such as the Flaming Lips ‘Soft Bulletin’ High Llama’s ‘Hawaii’, Olivia Tremor Control’s ‘Dusk at the cubist castle’, Of Montreal’s ‘Gay parade’)

Of Course Brian has had the last word. Even thought it took 37 years to complete, it was still ahead of its time.

One of the main reasons I love Brian and his music so music is that he is almost an anti-rock star. While most rock music made in the 1960’s-1970’s by men was suffused with swagger, sexual (over)confidence and not a little aggression, Brian presented a gentler, most wistful vision of masculinity. He is not afraid to show vulnerability and tenderness. This may be why for many years he was unfashionable. But over time the quality of his music and productions have proved themselves.
It is interesting to note that Brian is more beloved and understood among the indie/alternative music community than he is in the mainstream. I love the fact that he was an inspiration to the Velvet Underground and Cream.

I can honestly say that seeing Brian performing. Smile is the nearest thing to a transcendental experience I have ever had. I have once sort of met Brian at a CD signing- I called up ‘God bless you’ to you and he smiled back at me.
I hope Brian knows how much love and joy his music has brought to his thousands of fans and that this love and the expectations that come with it do not overwhelm him. I hope he gets to make whatever music he wants

19. My favourite Paul McCartney Beatle Songs

1. The Long and winding road (Let it be naked version)

2. Helter Skelter

3. Got to get you into my life

4. Let it be

5. Hey Jude

6. Hello, Goodbye

7. I will

8. She’s leaving home

9. Back in the USSR

10. I’m down
Some solo/Wings tracks I like-

Maybe I’m amazed

London town

With a little luck

Shout out also to ‘Step inside love’

18. June 1942 (to Jim and Mary McCartney of Liverpool)- it’s a Mac attack

While George always has and always will be my favourite Beatle, have I to doff my cap to Paul. If for no other reason than he is seriously under-rated. Paul has an image as a cuddly inoffensive figure since the 1970’s. John Lennon’s tragic and appalling early death, his obvious interest in the avant-garde (as witnessed in his marriage to Yoko Ono) and his political activity have mean that he has always been seen as more credible. However over the last few years there has been a long overdue reassessment of McCartney’s contribution to popular culture (the loss of his beloved Linda and breakdown of his second marriage must help).

McCartney stayed in London throughout the Sixties while the other Beatles settled in the commuter belt. This enabled him to keep in contact with what was going on artistically. He had an interest in electronic music going back to 1965, creating the legendary lost track ‘Carnival of light’ which he recorded almost 18 months before John recorded ‘revolution’.

It is telling to compare the way John and Paul expressed their grief at their loss of their mother’s in their teenage years. John’s songs ‘Julia’ ‘Mother’ and ‘my Mummy’s dead’ are highly personal and particular to his experience of losing his mother Julia. They are also emotionally raw. Paul’s ‘Let it be’ imagines his dead mother Mary comforting him during the break-up of the Beatles. In doing so he wrote something which becomes a song which speaks more universally and become a song which has brought comfort to many.

It is also noticeable that McCartney compositions tend to be considerably more popular with Soul artists than Lennon’s. Among the tremendous soul versions of McCartney’s songs I particularly like are ‘Yesterday’ by Marvin Gaye and also the Impressions, ‘Hey Jude’ by Wilson Picket, ‘Eleanor Rigby’ by Ray Charles and Aretha Franklin (amongst hundreds of soul versions of his songs). (Indeed McCartney is much respected by the other members of the June42 club to the point that Brian Wilson and Gilberto Gil both covered different songs of his from Sgt. Pepper ‘She’s leaving home’ and ‘when I’m 64’ in their recent concerts)

McCartney also has also in the last few years been very consciously keeping up to date with what is going on in popular music. He appeared on Super Furry Animals track ‘Receptacle for the respectable’ crunching vegetables in a tribute to his doing the same thing for Brian Wilson in 1967. He also created a dance act ‘Fireman’.

McCartney took stewardship of the Beatles in the difficult period after Brian Epstein’s death. He was also generous in writing and producing other acts.

Kudos to McCartney  for releasing a genuinely politically contentious song ‘Give Ireland back to the Irish’ in 1972. This was banned by the BBC. Kudos also for releasing ‘Mary had a little lamb’ as a pointed response to the controversy surrounding this song.

I also have to say that ‘ let me roll it’ his generous response to John Lennon’s ‘How do you sleep’ stands enormously in his favour.

All in all Sir Macca we salute you. And you were right about the 'Let it be' album. Have to admire that you were so bothered, you got the original released 34 years on.

17: Conversations with Lucy

I have referred in an earlier post to my friendship with Lucy. I will go further into how we became reacquainted in a later post but want to share a few thought about our friendship here.

Lucy and I were born within a year of each other to young parents. Both our families are Catholic with strong ties to Ireland. We have some strong women for our aunts. We have younger brothers with families. We both have been close to our Grandmothers.

Lucy often says to me that I get things that others do not. We have both struggled to feel taken seriously by older members of our families (usually the generation above). Often it is female relatives (usually aunts!) who can be an issue. We often feel as though our achievements and ability to live our lives independently count for little. We know that our families do not mean to do this but are often unaware that they are patronizing us and do not realize how much we have dealt with in our lives and what we are capable of. This is not to say that we do not love our families.

We have both struggled to be taken seriously in the work place, despite how we apply ourselves and our best efforts to achieve results.

Lucy travelled around the USA and Canada by herself for three months about a decade ago. She has run her own household since she returned. She also runs a local TS support group, which believe me requires considerable organizational skills! She took a large role in looking after a family member who was ill over a three year period (part of which involved taking them to many hospital appointments).

I have a masters in librarianship, a mortgage and a pension yet am treated as though I am little more than a teenager.
Lucy has a very unselfish and accepting nature and always manages to make us feel good when we are with her. She enriches our lives with her generous spirit.

There is unfortunately ‘Little women, little minds’ syndrome which many women with TS have to deal with. Women with TS also are often more accommodating and less complaining than most people. We have so much to offer and I am so glad that I have Lucy and other women with TS as good friends. It is often what you do not have to say or explain that is important.

16: Ain’t no place like Motown…

Julien Temple: Requiem for Detroit /Michael Moore: Capitalism a love story

I recently saw the above two films. There were some interesting comparisons between them.
Julien Temple's film both tells the story of the automobile industry in Detroit and the effect that its decline has had on the city. He talks to local figures including Martha Reeves and John Sinclair about their memories of the city and what they feel about its current situation.

Temple's footage shows a ghostly city whose main industrial buildings and communities are deserted and run down.

The film argues that Detroit has suffered as a result of the short sighted profiteering of those who ran the 'Big three' car companies. They pushed automatic obsolescence and larger more fuel inefficient models such as SUVs, rather than develop new technology. While this lead to boom times during the 1910’s-1920’s and after World War Two over the long term it has meant that the ‘Big Three’ have suffered in last few years as people look for more fuel efficient cars.

The film also explores how the development of post war communities in the suburbs further added to Detroit’s decline and undermined what limited social cohesion there was. The city also has had serious racial divisions, which finally erupted into the major riots of 1967 (which arguably the city has never recovered from).

Temple, who has made documentaries about the Sex Pistols and Clash makes regular references to Detroit’s rich musical history which includes John Lee Hooker, Iggy pop and Eminen as well as Motown.

The footage of the derelict spaces in Detroit is truly astonishing. As one commentator says nature is beginning to reclaim the city. Nature seems to be avenging itself on the city which did most to perpetuate the culture of the car which has had such disastrous consequences for the environment.
There are signs of regeneration in Detroit. However this has happened more as a result of local community activism than any government or business actions. In particular Detroit is at the forefront of the ‘Urban agriculture’ movement which has been lead by elderly Detroiters who originally came from the deep south. Ironically Detroit may now offer a vision of a more environmentally sustainable city.

Anyone who has followed Michael Moore's career will be familiar with the devastation on the closure of the GM plant has had on his home city of Flint, about 70 miles from Detroit.

Moore’s latest film is an exploration of the effects that lassiez-faire capitalism on the USA over the last thirty years. He explores how average American’s have been pushed into debt and poverty as their terms of employment and pay have been reduced, as the power of financial institutions and corporations have increased.

Moore explores the low pay of airline pilots and something called ‘dead peasant’ policies by which corporations are able to take out large insurance policies on their employees.

Moore also discusses the bank bail-out showing how the banks managed to exploit the situation to get a massive government handout.

Moore finishes his film on a positive note, showing Americans taking non-violent peaceful action to reclaim their homes and workplaces and working together.

Moore is obviously still very passionate and funny about the inequalities in US society. However as he says at the end he is tired of doing this and hopes others will take up the cause. Being made a hate figure to the US right has obviously affected him. I hope he will continue to makes films as he still has a considerable amount to say and has been proved right over the long term (compare Requiem for Detroit to his film ‘Roger and Me’ about the effect that GM’ closure of its Flint plant). He reflects on the irony that Flint temporarily was used as a base for banks to send out repossession notices.
Moore also interestingly defends the left wing Roman Catholic clergy of his native Michigan
Both films refer to the Flint strike of 1936-1937 and use the music of Iggy Pop to express the rage of the working American. Both films celebrate the survival of the human spirit and community in the face of an uncaring system. That has to be a good thing.