Blog

Homeless at Home

at The House of Smalls Gallery Edinburgh, running during the Fringe Festival

Disability and homelessness: The idea for using tents in my work began when I wanted to raise a physical awareness of homelessness by placing life-size tents outside the local authority housing offices, each tent representing a member of my household, my family. ‘Homeless at home’ is a phrase in caselaw when it is unreasonable for a disabled family to live in their current situation. I needed to somehow make this hidden crisis tangible.

The tents were going to be placed outside the Council building, in front of the bricks and mortar of the very people who were/are responsible for causing my family significant harm with their lack of suitable housing, the endless waiting and absolute disregard for our disabilities. The cruelty and inept runs very deep within these institutions and they enforce silence of the vulnerable by manipulating their systems, and blatantly ignoring existing frameworks intended to protect us. The tents were going to be covered with words, emails, housing legislation and statistics describing the situation… Their words, and mine, and the law, things that they choose to ignore.

Tents, synonymous with rough sleeping, I wanted to draw attention to the other ways in which we are homeless. I never did make the piece of work described above, in lieu of my big tents; as has been the way over the past year; I have gone small. I have made a mini-version of my initial idea. The presentation of the tent being within the dolls house, is further illustration of ‘homeless at home’.

The reasons for the change of presentation? a) a creative desperation to make this activist artwork, even if I can’t go big, b) because I was made so unwell by the very situation I was fighting, I had nothing left in the tank to make the work in any format at all for a very long time, c) because I was advised by heads of various local organisations that my work could be seen as adversarial and not in the spirit of working together; essentially, ruffling feathers, would get me nowhere, antagonising them would result in a worse outcome. It’s crazy to think that I was so frightened of making our already unbearable situation worse, that I chose to heed that advice, d) There is always another level of ‘bad’ that can be imposed on an autistic family who are asking for help (see my previous work about the modern-day witch hunts/institutional discrimination of autistic mothers, fii and parental blame).

It is shocking how quickly Local Authorities turn on families when the support services don’t want to put funds in to preventing further harm, instead hey would rather save their own purses, and perpetuate it. This is when they get nasty, deceitful, totally void of any compassion or ethics, they will do everything within their power to avoid responsibility and instead misrepresent disabled people and mothers for asking for what we are entitled in law. ‘Spend to save’ is lost on these people. Care Act and Equality Act is lost on these people. Human Rights are lost on these people. They ignore and ignore and ignore, hoping we go away. Leading to further health and social care inequalities, and then people just die. Even those of us who somehow cling on, and appear to survive, we do go away, eventually. We are expected to compromise beyond what is reasonable, what is legal even, but if we don’t, we are involuntarily forced into submission, scaremongering at its most powerful. If you ask too much, they threaten us with Child Protection, they would rather pretend the worsening situation is the fault of the mother and not the fault of a broken system keeping disabled people down, they are the creators of harm, they need to be held to account, but they never are.

In all honesty, I have struggled to make this piece because of the surrounding trauma that we are continuing to live through as a result of nothing being resolved still to this day. I had to be a part of this show; I had to share our story.

In 2023, we were described as “a family in crisis”, and even with that information, the Local Authority and Housing Associations, have been combative towards expert evidence, oppositional towards our disabilities, and outright discriminatory in the way we have been treated. It’s a fucking disgrace, and even with the ‘law’ on our side, no one is held accountable. No one is going to pay for their wrongs, yet we have suffered greatly at the hands of inaction and discrimination. Being a family in crisis two years ago, has since torn my family apart, made for agonizing consequences, will cost the state more now and long term, than if they had acted decently then. However, it’s every one else’s problem. It’s always someone else’s job.

At the crux of this, are two autistic children and two autistic parents who’s needs are not being met and whilst I try to cut red tape at every turn, it is the children who are being further traumatised by their unsuitable housing, and it is the children who are being held together only by the fragile strands I have left, and with red threads on blue fabric, I can try to expose the truth and mend things for them. Slowly. Too slowly.

Disability and Homelessness. It’s hidden.

Homeless at Home
Mixed media textiles
20cm x 20cm x 20cm
£POA

Accused 2023 (Keep Fighting)

NEW REPORT IN TO FII BY CEREBRA AND LEEDS UNIVERSITY

Fabricated & Induced Illness is the latest patriarchal institutional tactic, in a long line of historic and contemporary witch hunts against women, others & now, Mothers.

Parental Blame is the Stick they beat us with,

FII is the rope they hang us with.

Bernadette Louise 2023.

This is the last work i made about this topic, and the last time i made work (about 6 years ago) as a result of the impact bernadettelouise.com/artist/accused/

Being Well Strategic Group

Today the All Age Autism Strategy for Herefordshire and Worcestershire, is an agenda item on the Worcestershire Being Well Strategic group meeting. I am led to believe that this is something of a reorganisation and a newish meeting, but it sits beneath the Health and Wellbeing Board. Last year i attended the Health and Wellbeing board (here is the post from then). We were given the impression that the Autism Strategy is supposed to be recalled for their attention this year. It seems that instead of that platform, the ‘being well’ meeting is carrying out that function. I am unclear as the true purpose of the meeting, whether it is for updates or scrutiny. As i am unable to attend this meeting in person, and i wish to express personal views and not one of any organisation i am or have been associated with, i have been allowed to send a statement to the chair of the meeting. I have been told that the chair will read it when the agenda item is raised, i will wait to see if that does happen. I have pasted what i have sent below, and i have informed them that i will be publishing it. I have taken this opportunity to be frank about our circumstances, and as you will read, it is not naming names and accusing anyone specifically, therefore, i strongly believe that i have taken a fair and just approach to this, and whilst i am incredible angry, disenfranchised and under immense pressures, I have not gone in with a personal axe to grind – as would, be entirely understandable if i did based on my experiences, however, i refrained from doing so, offering a brief insight in to what is a massively discriminatory and demeaning situation, made worse by the organisations represented at this meeting today, and many more. I am just disgusted that something i naively out my name to (as pictured below), during a challenging disability period for me, has been totally useless to families like mine. The layering of complexities are all within, I wish it were not the case that i had anything bad to say, but here we are. (here is the strategy).

Statement for the wellbeing Strategic group meeting – Autism Strategy

Dear all

Last year I co-delivered the Autism Strategy at the health and wellbeing board. At the end of what was a strategic presentation illustrated by personal anecdotes, the chair thanked me for sharing the experiences of my family and hoped that when I return to update the board, that things would be better. I cannot let this opportunity pass, without giving you that update. 

I am afraid to tell you that since the signing off of the autism strategy, I have struggled to find one area where the strategy is having a positive effect for my family. This appears to be consistent across many autistic families in the county, I will not speak on their behalf today. I will speak only about our situation and what has come to pass, in that year since I last spoke. As a family, all of us diagnosed autistic, with other diagnoses too (ADHD, CPTSD, Tourette’s, PDA, OCD), we have only experienced further negative treatment, further harm and direct discrimination, at the hands of the institutions purportedly here to support disabled people (including autism). I feel obliged to share my views, as I am a local face for autism recognition (even so far as I have a page in the autism strategy) and with this I hoped to be a face for changed, but this has simply not been the case. I acknowledge that many will not recognise my negative feedback, but be assured, this is because it is not exposed as the shame in doing so and ongoing fall-out by navigating and fighting a broken system, is silencing people like me to in submission. Many will not want to hear it, and if I described in detail the issues we face, we would be here for a very long time, time people just don’t have. Please don’t feel that I am being impatient by expecting an immediate impact of the autism strategy or suggest that ‘change takes time’ because I do accept that, however, the Autism Act and the strategy have been around for a long time in one version or another, and it is real life impact that is important to me. The fact that people are blindly ignoring existing frameworks and research is unacceptable and it is not about strategies taking to time to embed, because the accompanying legislation, such as Care Act, Equality Act, PSEDS, should by this point in time, be very well established into day-to-day working of all levels of local government and health care. 

This time last years I was representing the ICB, but I am here today in a personal capacity. After over three years in the role, it transpires that for the duration of it, I was being mistreated by the system. As an autistic person, in a strategic, high-level role, doing a job that was advocating for the needs of autistic people being heard and met, I was not receiving the same acknowledgments back. This area of failings, should have been avoided and employment is an area of focus in the strategy (priority 3), yet the very organisation I represented was not treating me fairly or lawfully, in a role that I specifically fulfilled as an autistic person. 

We are consistently beholden to the ‘system’ to get our needs met, our education, housing and health. Once families become involved in this cycle, there is no way out – this is not what life should be like, and this is not what the autism strategy or the Care Act are about. There are huge inequalities across the board and if I were to pick out each individually, again, it would take substantial time. Priorities 1, 2 and 4, are not having any considerable effect on any of these areas of failure we are experiencing. Instead of supporting change and championing skills of families and allowing them to proactively meet their own needs with support, people are left with insufficient help and treated instead with contempt for simply asking for what they are entitled to, in law. The law is frequently disregarded by many of the organisations around the health and wellbeing strategy table, and those organisations signed up to the autism strategy last year, in my presence, yet it is the case that those very people representative of their organisations, continue to let my family down. 

I have struggled hugely with the duplicity of this, feeling complicit as part of a system failing my own family, whilst trying to help, but being put at a direct disadvantage by my ‘employment’ situation whilst doing so. I have been ignored and discriminated against, my family have been let down and the multiplicity of the issues, as life is complex for many, even more so for autistic households, we have been put in avoidable situations, and life made unnecessarily worse due to the failures of the system.

The Care Act in England aims to promote well-being and independence by preventing, reducing, or delaying the need for care and support, and minimizing harm. It emphasizes early intervention, focusing on helping individuals maintain or regain skills, and preventing needs from developing or worsening. None of this has been in the case for us, in fact the very opposite is true. 

One of our biggest issues we face, in having our multiple autistic needs met is ‘Housing’. This effects our ability to access our health and therapies, education, social care, and meaningful occupation. For everyone, housing is considered the foundation of health, education and participation in society. However, for autistic people, it is more, it is vital to living a functional life. I have exhausted all avenues to deal with our issues on a personal level, but there has been a sustained oppositional attitude by leaders, rather than one of support and compassion. We have experienced inhuman and degrading treatment at the hands of this process, and had our family torn apart as a result of the Care Act 2014 not being respected. There is no holistic thinking, no joined up approach across sectors to meet needs. I have witnessed the turning of backs and the closure of discourse, while everyone tries to aggressively protect their own budgets, instead of working together to meet disabled family’s needs under the Care Act. 

We have been let down for years, even legal process are impenetrable for people like me, and legal support is almost impossible to obtain due to punitive limitations and lack of capacity. There is no accountability and no justice.

I tried to encourage joined up working and to resolve our issues with the knowledge I have, but no one wants to hear it, everyone eventually turns their head, and hopes we go away. In each of the areas that I outline, I have expended incomprehensible emotional and physical energy. Senior sector leaders acknowledge that we have complex needs, and we are entitled in law to have these needs met, yet other Senior sector leaders, oppose and undermine expert opinion, and tell me to “manage my expectations”. It is for this reason I become exasperated; They are not my expectations; they are health and social care needs identified in law.

I tried to tackle the housing difficulties head-on and was met with ignorance. I tried to tackle my employment issue head-on whilst still retaining the role I loved and am good at, but it has got me nowhere in doing so. I have tried to work with organisations, and it has caused me and my family nothing but further detriment time and time again. This is why I feel that the system is worse now for autistic people than it was before the Autism Act and National and local Strategy came along, because now people just downright disregard their part in it and are allowed to do so without consequence.

I am happy to go into further detail about each of these areas and how my lived experience could actually improve things for families like mine, however, how could I manage that, when every way I turn there is another barrier in getting my own family’s basic rights actioned?

Bernadette Louise

Autistic Person, 

Parent Carer (Children and Families Act 2014)

Carer (Care Act 2014)

The Ascent of Man

at The House of Smalls Gallery Edinburgh

I am so pleased to be part of such a wonderful group of female artists in this very powerful show ‘The Ascent of Man’. My constant fight against the patriarch and systemic injustices, I exhibited pieces about Local Authority Housing, disability discrimination and Autism.

This exhibition showcases the artwork of 70 female artists in both the gallery space and the dollhouse, made in response to their feelings at the ever-increasing oppression, repression and suppression of women around the world.

​

This show also includes the completed I Am Woman Project, a large textile piece by Holly Searle (The Subversive Stitcher), incorporating 81 small textile works created by over 60 women. This artwork is remaining in situ following the Contexture show and the background to the piece can be read on the exhibition page.

​​

The words and language used in profiles are exactly as provided by the artists so that work is portrayed as intended and that what artists want to say about themselves, their work and practice – however much or little and in whatever form – is said.

​

If you’re interested in purchasing/discussing any of the artwork please contact me. A 10% commission is applied to sales and, as with show fees, any money raised through commission is ploughed back into the gallery for rent, overheads and upkeep.

https://www.thehouseofsmalls.com/theascentofman

My work included in the show:

“The test that applies is whether or not the accommodation is reasonable for the family to continue to occupy” Photography/prints 13cm x 8cm £TBC

Building houses upon houses, miles and miles of suffocating and oppressive estates, overpopulated slums… instead of meeting the needs of disabled people, who, with right housing (nothing special, nothing fancy, not costly, but specific) would significantly reduce reliance on other services, and take pressure off already oversubscribed and full-to-capacity mental health and social care sectors. I think they just hope people go away. It’s cheaper if we are dead. Equality Act means nothing. Human Rights Act means nothing. Totally unable to get the representation that we are entitled, accountability is non-existence and legal services are impenetrable, meanwhile our rights are diminished and life, if it was even possible, actually gets more difficult, more harm is caused, becoming more vulnerable, less able to function, less able to be a part of society, more and more unwell, less and less life prospects. The Systemic abuse of Autistic Families is commonplace across all of the Public Sector which vehemently protects itself by causing vulnerable families the most harm, and as a result, we are stuck and silenced into submission. My family has been emotionally and psychologically crushed by the housing system. My fight against disability policies and suitable housing and even homelessness has seen me become so unwell that I can’t begin to explain here, a shell of my former self and still they suck all the life out of me. The constant battles become all consuming. It’s the system that’s broken me. Yet I still stand.

@i_am_bernadettelouise

“The test that applies is whether or not the accommodation is reasonable for the family to continue to occupy” (series) Print/reproduced print 29.7cm x 42cm £POA

Mixtape No.9

Mixtape No.9 is the latest group show from Cultivate, once again curated by Cultivate founders Emma Harvey and Sean Worrall. Please do go explore, go find out more (and yes, there is a Spotify playlist to go with ot all again as well)

What about the labels on each piece of art? What are you looking at? Is it a drawing, a photograph, a painting? Go and find out, you are essentially looking at a digital image of a piece of art and (in most cases) not the real thing. Who are these artists? What do they do?  How big are these paintings? How small are these pieces? Where does the artist come from? Does she have a show coming up? Where is he exhibiting next?  What do they think? What are you looking at? Go hit the links. This time we’ve only labelled the pieces with the artist’s names, nothing more, none of the other clutter, the aim is to make you go to their websites to find the answers, go to their social media, get on their mailing lists, go follow them, this show is merely your open doorway, please go through it. 

Cultivate presents Mixtape No.9 – an online art exhibition…

Welfare cuts

Just some thoughts: as of this time of day, around 7am 18th March.

I tried to phone Nicky Campbell’s Radio 5 live show for the first time yesterday. There have been many times i have wanted to, this time i did. I couldn’t get through of course, i assume because of huge swathes of callers desperate to speak on the issue of welfare and these imminent cuts.

I’m genuinely frightened of what is coming today. I’m an educated articulate 43 year old woman, with autistic kids, their dad is autistic with very severe complex ptsd. I too am autistic and adhd (diagnosed as adult). The disability benefits are being massively misrepresented by the government and the media. For one, They are conflating sickness and disability. They are confusing sick pay and pip etc. there are important differences not being discussed and the negative rhetoric around this has been shocking. I work, when i can, but am largely unable due to the school needs of my children not being met. I spend 3 hours a day in a car driving to a SEN school and another child has no school at all! I could work more, but the disability system is so broken at every level, i can’t. It’s not easy or cheap being like this. The application process to get any of these benefits is traumatic, hard, many people don’t get what they are entitled. People will die. Especially people with mental health issues, and/or autism. I am disgusted that labour of all parties are doing this. I regret voting for them. My vote will now cost people their lives. 

I am Bernadette Louise. 

I am an autism ‘professional’ and advocate for change.

THE LANGUAGE THEY ARE USING IS ALL WRONG _ THEY ARE GETTING IT WRONG _ and my concerns now about the autistic bullshit being a ‘different ability’… not a disability, but a difference or a ‘superpower’, will only add to the assumptions that people with a diagnosis of autism can do more, when there are cohorts who physically and psychologically cannot not, The increased anxiety this has already brought up has likely already seen some suicide attempts, self harm, due to the the lack of certainty, the fear, and adding pressure of those who cannot work, who will subsequently be left without their entitlements and with no way to address the discriminations they face, they are not a part of this conversation. They cannot fight the changes, even if they would be eligible still under any new regime, change requires ability, and it is hard to muster that when overwhelmed, people will end up going without, simply by re-design and lack of access…and there are no support systems to help deal with this kind of thing. Charities to help with PIP forms are at capacity. There is no one.

I cannot truly believe that this is coming out of Labours mouths! Every one on yesterday’s 5 live show who said they like these cuts, said they didn’t like the government, they were Tory voters, and yet, they openly LOVE this. It made me feel sick, and i feel used, and dirty that i voted for a red tory party, for this to happen to the most vulnerable people, that i desperately try to advocate for, for my children, for my family. Disgraceful.

Ofsted & CQC report outcome

“Widespread and Systematic Failings”

OFTSED logo. The OFSTED & CQC 20204 inspection results for Worcestershire: "Widespread and Systemic Failings". Worcestershire Parent Carer Logo.

OFFICIAL STATEMENT FROM WORCESTERSHIRE PARENT CARER FORUM

The result & findings of the Ofsted & CQC inspection align with the perspectives shared by our members and ourselves, which makes them unsurprising.

As representatives of the Parent Carer community, we are deeply troubled by the findings of the Ofsted & CQC report highlighting widespread and systematic failings in SEND provision within our local area. We share the concerns expressed by families across the SEND community.

Worcestershire Parent Carer Forum are committed to advocating for the rights and interests of children and young people with SEND and their families. We stand in solidarity with all those affected by these failings and are committed to working collaboratively with the Local Authority, Education, Health, Social Care, and other stakeholders to address the issues identified and drive meaningful change.

Our priority is to ensure that the voices of Worcestershire Parent Carers are heard and valued. We will continue to actively engage with the local authority,  and relevant health agencies to hold them accountable for addressing the failings highlighted in the report and to advocate for improved SEND provision across Worcestershire.

We call for transparency, accountability, and swift action to rectify the failings identified in the report and to ensure that children and young people with SEND receive the support and resources they need to succeed. Together, we can work towards a future where every child, regardless of their abilities or disabilities, has the opportunity to reach their full potential.

We look forward to the return of the inspectors in 18 months, where we hope the Local Area SEND Partnership leaders and stakeholders will demonstrate the effectiveness of the implemented measures with positive outcomes for children, young people with SEND, and their families.

The Worcestershire Parent Carer Forum team would like to take this opportunity to express our gratitude to everyone who contributed to our pre-inspection survey and submission.

Full details here of the inspection findings are here:

https://files.ofsted.gov.uk/v1/file/50252437

MIXTAPE No.7

Cultivate Gallery

Thank you again to Cultivate’s Sean Worral and Emma Harvey for putting so much effort and passion in to curating a wonderfully selected online exhibition. And thank you to all of the other amazing artists that i am lucky enough to share the Mixtape 7 online gallery exhibition with. It is always a privilege to know someone, anyone, likes my art. It is even more of a privilege to have the opportunity to see other artists and their work, and Mixtapes give us all this chance.

When i get a chance, i would like to add in some direct appreciation for those artists who i have discovered through Mixtapes and share their wonderful work, just to show some love. But for now, you will need to follow the group show and see what you like!

updated art bio

About my art career: I am a multidisciplinary artist, working across live art, installation, photography, sculptural/collage, and sound/video. I have always made work that represents life experiences, no matter how personal and painful. The work often takes the form of a visceral delving in to the domestic, medical and social realms. 

I spent my art education split between working for Arts organisations, and attempting to retain interest in the ‘proper’ route of University. I have a BA Hons in Fine Art, and a MSc in Psychology, as well as a whole lot of other knowledge around the body as a vessel and how we inhabit it.

I am particularly interested in the intersectionality of women/mothers, autism and mental health as well as socio-economic differences. As a late diagnosed Autistic woman, I am very conscious how labels can change how we present to others and how we feel about ourselves. I also explore the perceptions and repercussions that the wrong labels can have on us, and what this means. I make art about that, and the day-to-day scenarios we face as an entirely autistic family, trudging through the quagmire of malevolent and oppressive systems created by local and national governments created to keep us in our ‘place’. 

I have been an Artist for the whole of my adult life and I have been creating artworks and projects sporadically over the course of those 20+ years, factoring in the many barriers i faced as a result of my miss & missed-diagnoses. Before taking a ‘parenting hiatus’ from the art world to focus on the many faults with Health, Social Care and Education, I was  fortunate enough to receive Arts Council England grants several times, and work with some of the most influential artists in the scene. 

I was programmed at shows Fierce Festivals 2003 – 2008, The Barbican ‘Surreal House’, Act Art, and Visions of Excess. I worked on projects with the amazing Ron Athey and Lydia Lunch. I assisted and performed for Nicole Blackman, and L. Gabrielle Penabaz and met many other performance greats along the way. I shared billing with trailblazers like Kembra Pfahler, Marissa Carnesky and Kira O’Reily, and produced shows, such as ‘Deathtripping’ at Vivid Projects with work from Nick Zedd, Lydia Lunch and Richard Kern. I also had many performances and exhibitions solely in my own name, such as, ‘EostroxenEostrogen’, ‘Petticoat Nightmares’ and ‘Accused’ during which time I  never stopped fighting the internal battle, and one way or another, it still pours out of me through creativity.  

I am really proud of the work I achieved then and how it has led me to be the most transparent and eclectic version of my creative self that i can be. Something has shifted in me in recent months, and things artistically are falling back in to place.

I am looking to get a permanent space to work and show other’s works too, I’d like to work collaboratively with with like-minded people and bring together our talents as well as reforge my own path in the direction I am supposed to be on. 

I am based in Worcestershire, England. I would be pleased to hear of opportunities both locally and internationally and be contacted by potential collaborators, organisations and patrons t about supporting and creating together.

Autism Resources

Here are several links and resources that i have worked on:

The LeDer programme that now includes adults with an autism diagnosis

Sensory Friendly Environments in GP surgeries

Through the Autistic Lens: 

Making a Difference: 

The Sensory System: 

Improving the Lives of Autistic People: