Women and Mental Health

This is a guest blog kindly provided by Samar Ziadat, of the Lothian Health Services Archive.  In the blog, she describes the holdings of the ‘Women’s Health collection’ in the archives…

The material I was most interested in was to do with an Edinburgh-based organisation called ‘Head On’. It was founded in the 1980s by feminist women who were interested in tackling issues surrounding women and mental health. The holding we have for Head On consists of documents such as meeting minutes, correspondence between the women, planning notes and lists, newspaper clippings, copies of medical articles and journals, and leaflets and booklets made by the women in the organisation.

 
Head On committee members as pictured in a clipping from the Edinburgh Evening News, May 25th 1983

Head On’s constitution, which was drafted in 1984, states that the organisation’s objectives were to “set up projects and programmes designed to help women become more aware of their own mental health”, “to educate and inform the public, social services, the media and others with respect to women and mental health”, “to act as a liaison between, and support of, those working in the field of women and mental health” and “to cooperate in appropriate research”. The constitution also highlighted that membership is “open to all persons who are sympathetic to the association’s objectives”. A line found in Head On’s meeting minutes from June 2nd 1983 expresses that Head On“can mean different things for us all but at the heart it stands for our individual shared experience which enables us to reach out across differences to others and to feel better about ourselves”.

The work that Head On carried out in the 80s is still relevant and urgent today. According to AuditScotland, more than twice as many women are consulting GPs for depression and anxiety as compared to men, with those living in the most deprived areas having lower overall mental well-being and more GP consultations for depression and anxiety than those living in the least deprived areas. This echoes the sentiments expressed by the women at Head On, who asserted that “if you are a woman you are more likely to experience depression, have tranquilisers prescribed, or be admitted to a psychiatric hospital than if you are a man”.

 

 
A Head On booklet which was distributed at their health fairs (GD31/14/2)

The organisation’s earliest projects consisted of two health events, one being a ‘Women and Health Day’ which was held at Edinburgh’s still-existing Workers’ Education Association in 1982, and a ‘Women’s Health Fair’ at St. Cuthbert’s Hall which took place in 1983. These events were primarily targeted at women, but attracted and welcomed people of all genders, including their children. Talks and workshops on women’s mental health were held at these events, and literature written by the group was distributed.

In order to raise funds for their events, Head On organised parties such as the ‘GLITTER GALS DISCO’, which took place at Edinburgh nightclub Buster Brown’s, and charged a £1 entrance fee. Head On’s health fairs and fundraisers were planned through monthly meetings which were open to the public. A mailing list was also created which distributed information, meeting summaries and newsletters to members. During their meetings, the women of Head On delegated tasks to one another, discussed venue hire, drafted applications for funding, presented educational literature and illustrations which they had created to be sold at their events, distributed copies of medical reports and journals concerning women’s health, and most importantly, shared their personal experiences with one another.

 

 
Women sharing experiences at a Head On workshop in 1988

Below are some examples of the experiences that women shared at Head On’s meetings:

“We felt we were constantly under pressure to be good at everything, women must be the carers and the experts… there are expectations and assumptions that women will care. We are now seen as a resource by the state. Daughters take over the care of elderly parents, very seldom sons. Society expects women’s natures to be soft, nurturing, emotional, and mothering… Women give emotion but how do they receive it back?”November 9th 1982

“It is considered a virtue to keep the home spotless. The pressure and the expectations are there all the time. Women should do this and is considered failing if she cannot. Here enters conflict. Her identity depends on doing the job well. She feels she should be at home, but would often rather be doing something else. Many times she feels unfulfilled. She feels unrecognised and underpaid.”November 18th 1982

The meeting notes which I found most poignant were from January 6th 1983. When the committee asked the women at the meeting what wanted out of life they replied with, “I want peace to be myself”, “I want total economic freedom”, “I want strength to be me”, and “I want to have personal confidence”. When exploring solutions to these wants and desires, some women expressed that “I need enough physical and mental strength to be independent” and “I need to assert myself”. My favourite solution came from a woman who suggested listening to Diana Ross’ “I want muscles” or Joan Armatrading’s “I am a woman”.

 

 
Head On meeting notes January 6th 1983 (GD31/10/2/1)

The success of Head On’s health fairs lead to a request from the BBC asking to distribute some of Head On’s booklets for free. The booklets were originally written for the Scottish Health Education Group, and with this new request, the booklets were to tie in with a BBC radio and television series, Well Woman, which was about women’s health. However, due to government censorship, the BBC asked Head On to re-write the content of their booklets 36 hours before they were to be printed. Government officials felt that the booklets, which explained how the female body works and dealt with topics such as menstruation and contraception, were “overly concerned with sexuality”. This caused national outrage, landing Head On media coverage from outlets such as The Scotsman and the Guardian. Public opinion in favour of the uncensored booklets guaranteed that the uncensored version of the booklets were to be made available during the rerun of the BBC show the following year.

 

 
The controversial booklets created by Head On titled ‘Women and Depression, ‘Women and Anxiety’, ‘Women and Food’, ‘Women and Pills’, ‘Women and Sexuality’ and ‘Women and Smoking’ (GD31/14/1)

The attention that Head On garnered as a result of the booklet controversy allowed them to open a fully funded women’s centre.  The centre, which they named The Women’s Health Shop, functioned as an information service on issues that affect women’s mental health. The shop put on displays, held talks and workshops, produced feminist literature of women’s health, and became a meeting place for women to talk to women about women’s issues. Some of the talks and workshops held at the Shop had to do with the ways that menopause, benefits cuts, breast and cervical cancer, pregnancy and motherhood, and nutrition and stress affect women’s mental health. The shop also facilitated for self-help groups to meet, providing a space to share experiences of depression and anxiety with other women over coffee. Additionally, women were invited to view the Shop’s monthly displays, which advised how to eat healthy on a low budget, how to make their needs known to their doctors, and how to conduct self-examinations for breast cancer. A female nurse was also available to lend a sympathetic ear for any health worries or anxieties that the women wanted to discuss – this was especially important because many women didn’t feel that their mental health issues were important enough to discuss with their doctors who were largely male. A range of books and resources on women’s health were also made available for loan at the shop.

Although Head On and their Shop are no longer in action, there are plenty of resources on mental health available online at The Health Foundation, Mind, Timeto Change and Rethink. If you or someone close to you is struggling with mental health issues, please get in contact with your GP.

70 years of Autism, and what’s changed?

cropped-Yvonne-back-cover-icon-photo.jpeg

 

Guest blog kindly provided by Yvonne Newbold; a writer, speaker and trainer who is also the mother to three children, including Toby who is multiply disabled with profound learning disabilities.  Get in touch with Yvonne @YvonneNewbold, or see her website here.

 

 

When my mother left Dublin in 1946, just before her 18th birthday, to come to England to start her nursing training, the word “Autism” had only just been invented. Last week, 70 years later, I was delighted and honoured to be returning to Dublin to speak at the AsIAm National Autism Conference. How the world has changed in the intervening years – my mother would be thrilled to see how Dublin is now perceived – vibrant, cultured, creative, fashionable and edgy. In those days, as a teenager, she had to be home before dark with no excuses. In Dublin back then, everybody’s Mam would tell your Mam what you’d been up to, and woe-betide her if she was ever caught talking to boys.

Dublin Castle
Dublin Castle

My childhood was rich with tales of her Dublin youth, as well as stories of her nursing years, when she looked after children at a long-stay Surrey hospital miles away from their Inner London homes. The NHS was being set up, antibiotics were brand new and rarely used, and children died from conditions we now understand and can manage and treat with excellent quality of life outcomes. Back then, there were long-stay wards for children with both Coeliac Disease and TB, both terminal conditions for many children in those days. The children would die slow and prolonged deaths, with absolutely no hope whatsoever.  How much progress we have made in medicine too.

She also nursed children with autism, although of course they weren’t called that then. They were in the section of the hospital for mental retardation, the lunatic children, the ones, again, with no hope way back then.  So how much progress have we made in with Autism in the past 70 years?

Yvonne Newbold AsIAm Autism Conference

In some ways, we have come a long way, but in other ways we have stood still for far too long. At least we all know the word “Autism” and children with the condition are more easily identified and recognised. We have a better understanding of how therapeutic intervention can help children with Autism to achieve a much better quality of life too. We also understand much more about how ASD children relate to the world differently, and therefore learn in different ways. Our knowledge of autism educational strategies is increasing all the time, and it should be a really exciting time in the history of autism – it is now within our grasp to offer every child the therapeutic and educational experiences that will offer each of them the very best chance to reach their own potential.

12573702_1083202285044926_3788261042366929689_n

However, it’s just not happening. Not here in the UK, not in Dublin or anywhere else in Ireland, nor anywhere else in the World as far as I can see. We have the tools, we have the wisdom, we have the know-how, we have the research and we have the experience, yet our children are being denied access to their best chances of a meaningful future.

Yes, there are pockets of excellence, yes there are some children who are making great progress, but it’s not universal in the same way that it is for children diagnosed with other conditions. It is simply wonderful, and beyond my Mother’s wildest dreams as a young nurse, that every single child with a diagnosis of TB or Coeliac Disease will get the very best, up-to-date, evidence-based treatments and therapies on offer. It is fantastic that antibiotics have prevented deaths in hundreds of thousands of young children over the past seven decades. Infant mortality rates have also thankfully plummeted, and life expectancy is better than ever.

Unless you’re autistic.

I don’t have the Irish statistics, but in England, if you have autism, you are likely to die sixteen years earlier than the general population. Around 70% of people with autism also have a learning disability – and the England statistics have found that 3 people with a learning disability die a completely preventable death in hospital every single day.

Children with autism at school don’t always get the appropriate help, support and understanding. More and more children with Autism are being shoe-horned into ordinary mainstream schools where the teaching staff have no specialist training in the symptoms of autism and how to adapt the curriculum to appropriately meet their needs. Some schools are excellent, some teachers are fantastic, and some children are doing incredibly well. But many are not, and it’s just not good enough.

More and more parents are watching helpless as their children’s emotional well-being deteriorates and their self-esteem hits rock-bottom. Bullying is commonplace, self-harm and suicide attempts among ASD schoolchildren are on the rise.

Officially, national policy no longer locks up people with autism in long-stay institutions anymore. Yet hundreds of families are effectively imprisoned behind the closed doors of their own homes because of Government Policy. All because families are being denied the essential appropriate support, intervention and training in how to help their ASD children to develop and thrive in a non-autistic world. Their children exist in a state of heart-breaking distress with all the symptoms of the challenging behaviour that distress causes.

It would be unthinkable for any modern democratically elected Government to withhold treatment or therapies from a child with a physical long-term condition, so why are children with neurological differences not given equal access to the interventions that might help as a matter of course?

They’ll tell you it’s too expensive. That doesn’t wash with me. It will cost far more over the course of these children’s lifetimes to put right the wrongs that are being done in childhood.

Intervening now with the skills that an Occupational Therapist or a Speech and Language Therapist can help a child to acquire can make the difference between an adult life of independence or one spent in a care home with round the clock support workers.

Intervening now with behavioural support can make the difference between a child being able to look forward to a productive working life, or an existence locked away in their bedroom, frightened of the outside world. Intervening now with meaningful educational strategies can make the difference between a teenager who is attempting suicide because they feel so worthless, or one who is preparing to go to university.

Instead, society abdicates its responsibility, and their families carry the can.

This isn’t just the Government’s problem. It’s not solely the responsibility of the relevant Health or Education departments either. This is everyone’s responsibility. Why? Because over the past 70 years we still haven’t come far enough in changing attitudes, cultural norms, assumptions and prejudice. The bottom line is that people with autism, learning disabilities, neurological differences or any other form of disability are regarded as second class citizens by the general population. We have awareness campaigns, but they aren’t enough. We have legislative changes, but nothing changes quickly enough.

If it were people with green eyes who were dying needlessly at the rate of three a day in publicly funded hospitals, there would be outrage. If children who had brown hair were expected to attend schools where the teachers didn’t understand how to teach them, and they were made to feel so hopeless that they spent their teenage years self-harming, something urgent would be done to make things better.

People with autism are not valued, and their lives don’t matter. That is the message that is coming loud and clear from society, and until that changes, nothing else will. It starts with you and it starts with me. We can sit and wait until “somebody does something” but we are that somebody. If you don’t know about autism, find out more. There is plenty of great information online and plenty of great videos on YouTube.

As Dan Wilkins said, “Any community that excludes even one of its members is no community at all”.

My mother would have had a lot to say too. She cared deeply about people, she hated injustice or any form of prejudice, and she adored those long ago children she once cared for. Yes, even the ones who couldn’t speak, who sat and rocked all day, and who lashed out at anyone who came close. She told me so much about those strange and unhappy children, and she was puzzled and perplexed by what she might have been able to do to connect with them in some way. She never knew what it was called, but she was an Autism Advocate well before her time.

70 years of autism Mum

Mum passed away in 1979, and going back to Dublin after so long was emotional, poignant and moving, particularly now that I, too, am terminally ill. She would be bursting with pride that I spoke at Dublin Castle.

We had a wonderful day at the Conference, a day of insightful conversations with like-minded people who also want everyone with Autism to be able to live full and meaningful, productive lives. How do we harness that message and use our collective energies to make the difference that has to happen?

Asiam National Autism Conference Programme

One of the biggest barriers to equality that people with autism face is other people’s lack of knowledge and understanding. When people don’t know or understand why someone may be behaving differently, they can become fearful or judgemental, and that makes gaining acceptance almost impossible. That’s why it’s so important to keep the conversations going that we started in Dublin Castle last week, it’s conversations like this that can help to shift public perceptions and attitudes.

We can continue these conversations everywhere – in our communities, our schools, our hospitals, our workplaces and with family and friends, and have them online too. What can you tell someone this week that might help to make a difference to how they think about autism? Sharing this post or others like it might be a good way to start. Change can start with just one person doing one small gesture or expressing one idea. It can start with one act of kindness towards a person with autism and their family. It has to start somewhere, and from someone, you, me, all of us together. We can do this. Can you help?