Sanneke’s story – Free Our People Now

Between 2011 and 2018 I had been on a solo expedition travelling to different parts of the world, had worked in the diving industry and studied across four continents…

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In this blog I would like to highlight the crucial work of the Free Our People Now campaign, and why it is so important to bring to the forefront and into public political and social discussions in Britain, how we treat autistic and disabled people within the psychiatric system. To highlight the blight of socioeconomic and political policies created under this current austere government, which are hindering the basic right to life in the community of Britain’s learning difficulty and autistic population.

Everyone has a right to freedom and a right to a satisfactory standard of living, and though distressing the eyewitness and first-hand testimony, I write about the current mental health system and the intrinsic dangers it poses towards our neurodivergent population. I write about this in the hope for systemic change, as for too long this current government has avoided responsibility. In the following paragraphs I describe the series of events that led up to me effectively becoming institutionalized.

My experience

Between 2011 and 2018 I had been on a solo expedition travelling to different parts of the world, had worked in the diving industry and studied across four continents. I was capable, I was independent, and I was thriving, living in different countries and cultures. I have an innate fascination for languages and spent seven years of my life working in different parts of the world including Latin America and Asia. I had lost my father suddenly to a heart attack in 2012 and was healthily working through my grief by channelling myself into my life’s passions, travelling, languages, and diving. Suddenly in 2018, my brother became very unwell, and I made the decision to come home and help my family. The full weight of responsibility and loss came crashing down upon my shoulders and I became unwell and suffered severe emotional distress.

The greatest mistake my family ever made was reaching out for help to those who clearly did not have any understanding of autism, and the unique situation I was in.

The situation worsened and in January 2019 I was sectioned under the mental health act after struggling to cope with the traumatic events that had happened to me. The routine and structure that I needed to help me in my everyday life was suddenly taken away and I was left in a very dark place as I struggled to cope with loss. Little did I know the turn of events that was about to happen would change the very way I saw the world and the shape of my life forever.

To this day I am still recovering, and I feel it so important to freely speak about these events so that people can truly know the extent of what is happening in Britain’s psychiatric institutions today, and to give a voice for those who cannot speak out for themselves.

When I was placed under section, I was sent to an out of area beds situation, I was told that I was unwell and needed to be administered medication. I had been admitted on a section 136, which felt like kidnapping, and taken to a place of safety. They told me that they had the powers to hold me for up to 28 days for observation. Little did I know that 17 months later I would still be in a similar situation. I had never in all my life experienced such abject fear and terror. I was a brave woman who had travelled across the world solo, including military occupied zones and government red list countries and had never been involuntarily held or kept anywhere against my will. I kept questioning those who had the legal power to detain me; how it was feasibly legal to withhold my human right to liberty?

The national context

Over the months I was subjected to routine restraint and overmedication, and segregation. This is the reality of our medical model of psychiatry in modern Britain, a place that is allowing the systemic and routine abuse of autistic and many disabled people in profiteering hospitals.

Whilst our country drains the coffers of much needed social and medical care for autistic people in our communities, we are actively pouring millions of NHS and taxpayer money into what I would only describe as severe state-funded abuse.

We have had many hospital scandals uncovered in the UK, including Winterbourne, Whorlton Hall, St Andrews Healthcare, the Edenfield Centre Manchester, and the list goes on. There is little press coverage and a complete lack of support from the government regarding appropriate s17 aftercare, and often victims of psychiatric malpractice are left without any support packages in the community or any form of redress and pro bono legal representation or forms of redress for psychological abuse suffered.

What is also abundantly clear is that regulators too have absolutely no statutory power or oversight with regards to holding severe malpractice to account. The CQC and police hold no power to protect people under section from being abused by the state, and people who are supposed to be caring for them.

I believe wholly that the privatized healthcare system funded by the taxpayer is engaging in a typical profit before people model. As someone with complex needs who was placed in one of Britain’s money-making institutions, I can account for the fact that it did not make me better and left me with complex PTSD. The care was inadequate, inhumane, and subjected many people in emotional distress to a lot of unnecessary cruelty.

Moving forward

We, as a modern society must absolutely move quickly and decidedly away from these institutional centres, where medical abuse and gaslighting is rampant. I personally do not have all the answers, but more research and development need to be done and towards a holistic, person-centric community-based way of allowing people with autism and learning difficulties to have successful lives in the community.

I now live in the community, with my own support package that I have had to work extremely hard to set up myself with the help of my wonderful partner and full-time carer. I live in my own apartment and have my freedom, independent but near family. An independent life is something that I never thought imaginable when I was hospitalized. It has taken utter care and dedication to bring me back to the person that I was before the terrible experience of being institutionalised.

It makes me extremely passionate towards wanting to advocate and ensure that every ASD/LD person in Britain lives and thrives in appropriate care settings near their loved ones. We are living in the twenty first century and no person should be afraid of being taken away from the people that love them and care for them. Rather than spending millions of pounds on the institutionalization of our citizens, we should look for alternative, better social care and housing solutions.

The medical model of emotional distress does not apply and should never be used upon people with ASD/LD, and a psychosocial model coupled with appropriate transparent care packages that allow a person-centred approach are vital if we are to progress as a society. I still personally live in fear of ever being sectioned again, as it certainly did more harm than good. I keep away generally from mental health services as they do not understand my autism.

As a collective I really feel it is the right time in history for a neurodivergent movement when we come together to teach and embrace our likenesses and differences. Above all we need to educate our society on neurodivergence, and the government above all needs to enshrine the right of disabled people in the mental health act, with the enforcement of community treatment reviews that stop unnecessarily long hospitalizations.

I am really happy to be volunteering with Free Our People Now Campaign, and hope that more autistic people and people with learning difficulties will be given their voice in Britain today to talk about what it is they want and need from the government, and to lead lives in the community in their own homes instead of hospitals.