72. On the importance of knowing Women with TS are women

If I was nervous about writing the previous post, I am beyond nervous about writing this one. I have been thinking if I should now for several months. The fact I even have to write it, and the knowledge of some of the reactions I may get depresses me beyond belief. But here goes.
I believe that it is vitally important that we as women with TS can discuss our lives and experiences as women and our biology without any apology or censorship.
Firstly from a health point of view, we need to be aware of our biology as women.  We menstruate, we have gynaecological issues, some of us have been pregnant through IVF and given birth. I know all this from the experiences of my TS friends and indeed myself.
For example here is what I have had to deal with in last four years. When I was on one form of HRT ten years ago I only had sporadic periods. When my consultant changed my HRT, my periods got very heavy and I had regular spotting. After several months trying to get my GP to get this investigated, I had an investigative ultrasound. I was very nervous about what it may discover. While my womb was slightly thicker than it should be all was ok and the gynaecologist I went to suggested I went on a lower dose of HRT. However after almost two years I was still getting bad spotting. I brought this up My GP referred me to another Gynaecologist. When I explained what had been going on, he said I should have an investigative D & C. I did not expect to be called in for this four days later! As you can imagine, I was quite worried. The procedure discovered I had a cervical cyst (which can be caused by long term HRT use) which was promptly removed. I have had no problems since. But I had been through almost three years of investigations and worry. You may note that while my GP was sympathetic and responsive it took time for things to happen! I know another friend with TS also went through something similar as the same time.
Some women who are very dear to me have also had significant gynaecological issues and I hope my experiences have made me more sympathetic towards them. It is important that we can discuss women’s health issues and particularly the effect that these have on what is expected of us as women. I want to see beyond the health issues I face because of TS and understand and appreciate the health issues all women face.
But for me the medical issues are secondary to a more important issue. As a feminist (and ‘radical feminist’ at that) it is my understanding that there is something called patriarchy and that women as a class are oppressed. I recognise that within this women of colour and working class women face further issues but this does not mean that misogyny and sexism do not affect all women.
I could give so much evidence for this, just from the UK alone. There is the fact 140 women were murdered by their partners/ Ex partners in 2013 in the UK. (Thank you Karen Ingala Smith for your witness and work in ensuring this is recorded)
http://kareningalasmith.com/counting-dead-women/femicide-118-uk-women-killed-though-suspected-male-violence-january-november-2013/
http://kareningalasmith.com/2014/01/16/more-british-women-were-killed-though-mens-violence-last-year-than-british-troops-killed-in-afghanistan-in-the-last-3-years/
I could give the horrifying statistics for domestic violence in the UK- 80% of victims are women
http://www.theguardian.com/society/2013/mar/07/domestic-violence-figures-citizens-advice
I could say that there has still not been a single conviction in the UK for female genital mutilation, and that it is only recently through the hard work of courageous women like Leyla Hussein and organisations such as Forward – which importantly is run by women of African origins.
I could say that women in the UK still earn significantly less than men
http://www.tuc.org.uk/equality-issues/gender-equality/equal-pay/women-still-earn-%C2%A35000-year-less-men
http://www.bbc.co.uk/news/education-21698522
I could give these statistics from Rape Crisis UK
Approximately 85,000 women are raped on average in England and Wales every year
over 400,000 women are sexually assaulted each year

This is just a very quick overview of the situation in the UK. I want to make that point that as women with TS, we are just as affected by issues of violence and discrimination against women as every other women. I know women with TS who have been directly impacted by these issues, just as I know many women who have been impacted by these issues. I want to stand with all women, not just in the UK but throughout the world.
I will not apologise for knowing women with TS are women. I will not apologise for knowing what women as a class have to deal with in a patriarchal world. I will not apologise for linking these two facts and wanting to make a better world for all women. I only make life for women with TS worse if I sit by and remain silent.

71. TS and disabilty - some thoughts

I recently saw a post on Tumblr from a woman with Turner Syndrome asking if TS was a disability as she had always believed it to be. I decided to write this post rather than answer directly. Please note that this is only my personal opinion and reflections!
This is a complex question. There are many different definitions of disability. Here are There is a legal definition of disability in the UK. You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
Further details here! https://www.gov.uk/definition-of-disability-under-equality-act-2010.
Obviously this legal definition is important for issues such as social welfare and social provision.
I found this definition on the World Health site
‘Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.
Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.
People with disabilities have the same health needs as non-disabled people – for immunization, cancer screening etc. They also may experience a narrower margin of health, both because of poverty and social exclusion, and also because they may be vulnerable to secondary conditions, such as pressure sores or urinary tract infections. Evidence suggests that people with disabilities face barriers in accessing the health and rehabilitation services they need in many settings.’
http://www.who.int/topics/disabilities/
I looked at the wikidepia entry for disability. This looks at more depth at issues such as spectrums of disability, issues around mental health, and the effects of long term chronic ill health
http://en.wikipedia.org/wiki/Disability
Then we get to the issue of disability rights. When I attended disability awareness training recently the trainer said that while the effects of childhood polio was an impairment, it was society that rendered him disabled. He also got us to consider various forms of impairment and what we should consider ‘disability’
Being legally defined with a disability is important for getting the necessary social welfare assistance and support in employment. Keep this in mind!
Having looked briefly at various definitions of disability (please keep in mind!), I now will give my tuppence’s worth on what I think about TS and disability.
First of all it goes without saying that all women with TS are affected in different ways and all of us have different health issue. I wrote in an earlier post about specific non height/fertility issues that women with TS face such as hearing, diabetes, heart and kidney conditions. I have heard horror stories about the treatment women with TS have received when these disabilities are not recognised. It is very important in these cases that we are given and indeed insist on the necessary support with these issues. But I do not believe that having TS in and of itself is something which requires us to be legally defined as disabled.
I had members of my family pressurising me years ago to use my TS to get myself defined as ‘disabled’. I actually was very offended by this as to me it send out as message that I was not capable (and their behaviour towards me on other issues re-enforced this). It made me feel like they saw me as second class. I was also offended as I saw this as taking away support from people with disabilities and undermining their real needs.
,p>I also get extremely concerned about what is really going on with TS women being called disabled. I often feel that this is to do with the issue of the alleged ‘Social/cognitive’ issues we are supposed to have (I know this from bitter experience!) and our alleged ‘Autism’ type behaviour. I cannot go into things further but in my experience these supposed issues can be used against us or to belittle us. Even if these issues exist (and there is a lot of controversy about whether they do!) I have never once seen any constructive or useful suggestions about how to help us.
I also get very concerned about the fact that as TS is a condition that only affects females, this focusing on cognitive/social issues is because of purported failure to behave in the socially prescribed manner females are supposed to. I can’t also help but link this back to our fertility issues.
We live a world where people who have disabilities (of whatever sort) are routinely stigmatised and discriminated against. As I mentioned earlier in this post, people who are defined as ‘disabled’ want to question just what is ‘disability’. In the UK, social welfare provision and employment rights for people legally defined as ‘disabled’ are increasingly under attack. As women with TS we should be very careful about any attempt to call TS a ‘disability’

70: A Biography in ten albums- parts 9 & 10

9: Great Lakes- Great Lakes (Kindercore 2000/Track & Field 2001)


My copy of ‘Great Lakes’

In August 2000 I went to a music festival in Athens, Georgia. It was a fascinating and rewarding few days on a number of fronts (I got introduced to a lot of very good music). I am glad I got to see a part of the USA outside of a big city. One of the bands I saw at the legendary 40 watt club was Great Lakes. This band, along with Of Montreal were the main bands that made an indelible impression on me. I brought the self-titled debut by Great Lakes in September from Kindercore Records in the USA (it was not yet issued in the UK!). It became a favourite album to listen to especially on my journeys home from Brixton on the bus. I clearly recalling listening to it as the rain fell outside one evening. It also accompanied me on long bus rides down to Bromley to see relatives and friends. This was the beginning of a very happy time for me.

I could give a long complicated history of where this particular album fits into the Athens, Georgia music scene, namely what was called the ‘Elephant 6 Collective’. As well as the then core of the band (Ben Crum, James Huggins III, Dan Donahue) it included other (then local) musicians from such as Scott Spillane from Neutral Milk Hotel and Kevin Barnes and Dottie Alexander from Of Montreal amongst others. I particularly I really like Heather MacIntosh’s cello playing on tracks such as ‘Parachutes’. There is a tremendous sense of camaraderie and warmth on the album. There are songs about a mother’s protective love (Giants and tigers), the unknowability of another human being (Parachutes), and lovely instrumental interludes (a banana). The music is gently psychedelic but also very melodic and focussed. I know that the then three core members lived in the same house when they recorded this (in fact they may have recorded this in this house!) and this closeness shows. I think the songs benefit greatly from Ben Crum’s vocals which have strong elements of what is called ‘alt-country’ which bring a unique element to the music.
Sadly I cannot find any tracks from this album on Youtube. I wish I could share these songs – particularly ‘A little touched’ which is one of the songs I think describes me (Got the headphones on and it’s all too much).
I was absolutely delighted to find out that the band were coming to the UK in the summer of 2001 (I think it was August and I got to see the band at Toynbee Hall in the East end (I have been to number of enjoyable gigs there). It was a great evening with an almost party feel as it was clearly a gang of friends playing together and happy to be doing this. The album had just been released in the UK on Track and Field records, who are responsible for organising some of the most enjoyable gigs I have been to and issuing some great records. One band member was so surprised I knew the album he came up to me and chatted to me.
As result of this gig I dropped an email to Ben Crum of the band and we have remained in email contact since (on and off!). It has been a very enriching experience to be in correspondence with one of the musicians whose music has played such an important role in my life and I am always grateful for Ben’s courtesy and friendship.
I have managed to see the band a few times since 2002. There have been some great gigs at the Water Rats near Kings Cross. However possibly my favourite gig was at the Betsy Trotwood where various ‘Elephant 6’ musicians played solo sets. This evening is up there with seeing ‘Smile’ premiered and seeing the Impressions live in the pantheon of great evenings of my life.
I am very glad to say that Great Lakes are still going with a different line-up. I can really recommend the bands’ 2011 album ‘Ways of escape’ which is just a beautiful, mature and melancholic work.

10: Minnie Ripperton- Come into my garden

My copy of Minnie Ripperton’s ‘Come into my garden’

There is nothing more enjoyable than hearing something playing in a record shop and instantly needing to get that record. I got introduced to Os Mutantes and The Parliaments (George Clinton’s soul group which eventually became Parliament) this way. I came across this record this way. I was in an independent record store in Edinburgh during the festival in August 2002 when I heard this album playing and I just had to get it.
Minnie Ripperton was just 23 when she recorded this, her first solo album but she was already a music industry veteran. She had been in The Gems and the Rotary Connection (which she was in with Phil Upchurch and Sidney Barnes) as well as recording some solo tracks in the mid-sixties as ‘Andrea Davis’ on Chess.
This album continues on from the psychedelic soul of Rotary Connection and greatly benefits from the lush production, orchestral and arrangements
I managed to find a Wikipedia entry for this album which mentions that this album moves away from the psychedelic rock of the Rotary connection into something more soulful and reflective. The most famous track from this album is ‘Les Fleurs’ and its gently feminist and ethereal lyrics set the tone for the album.
Minnie Ripperton – Les Fleurs- uploaded by Minnie S Garden

However my favourite track from the album is 'rainy day in Centreville'
https://www.youtube.com/watch?v=55xb0LYWqt4
Minnie Ripperton- Rainy day in Centreville uploaded by ejaydee

Tragically Minnie died of breast cancer at age of 31 leaving behind her beloved husband Richard Rudolph and two children Marc and Maya, who is now a successful actress.
I am including this album because I feel it is important that I have an album by a woman, especially an African American woman in this list.