Nearly a decade is a long time for any battle – especially if it’s for your human rights, autonomy and respect. I, Dawn Sanders, founding editor of Barriers to Bridges, am breaking a long-held silence to shine a light on the ongoing battle between me (as a mouthpiece for my son) , his support agency and Sheffield local authority. My son, a 26-year-old young man with complex additional needs in the form of hearing impairment/partial sight and some learning difficulties, also has a zeal for life, adventure and has always been a sensitive, sociable guy with an inquisitive spirit and love for learning. We’ve always been extremely close – it always felt like we could take on the world in our own way, just us two. However, these days, his life is extremely controlled, stifled of opportunity or adventure, and our family autonomy has been taken.
“Dawn raised her son alone for eighteen years, preparing him for a full life and independence” – Kathy Terwilleger.
Background and Formative Years
Moving to Brighton when I was pregnant was one of the best moves I made. I fit right in, and as an outspoken, opinionated, boho free spirit with unconventional views, I found roots. My son (under the pseudonym Sage to protect his privacy) had shaky beginnings. Despite this, we had love and the support of friends and those around us.
In those days we had drumming on the beach, festivals, gatherings, camps and travelled to stone circles and lived in Tipi Valley, an eco-community in Wales, where I taught him to walk, pressure free.
He was a late bloomer, so there was always pressure from official types, because he didn’t develop to the ‘given tempo’ of most. Life was far from perfect, as single-parenthood is daunting, but it was coupled with Chinese whispers all around us, because of my severe visual impairment. There were mixed reactions in the streets when I went out-and-about. but I usually got positive remarks – he was such a beautiful child and I was always proud to the point of probably a little embarrassingly doting. People make mistakes and one of my biggest was leaving Brighton. My reasons are complex, but life was never the same.
By the time Sage was nearly 10 it was clear he needed specialist schooling. Combing the country for the right placement, we stayed in the north for his specialist education.
The Absolute Worst Mistake of my Life
Moving to Sheffield, I had all the best intentions. I had had enough of small towns and Sage was thriving at school. However, almost immediately, things got heavy. I’ll never forget sitting opposite an employment adviser in the jobcentre who said, ‘the city council here are macho and authoritarian’. I don’t know why he said that, but it later turned out to be a red flag.
Little things I said were amplified or taken out of context. I had this social worker on the phone to me at least 3 times a week – just because. The reactionism felt like, ‘ooh uh, single mum with visual impairment and kid with special needs – what have we here’?
Harassment and Intimidation
Things got so bad, I turned to my then MP David Blunkett, who has a visual impairment himself. He wrote a few letters telling the council to ‘back off’ – they would for a while, but would reappear at any given slight. Stage 1 complaints, stage 2 complaints – nothing made any difference. Things climaxed, or so I thought, when the plans for a support worker, who was a close friend of ours, were botched for coming with us to America to visit family. So, I put plans in place with my sister in Wichita Kansas, and in the throes of revising for an exam, I got a call from a social worker. She said if I didn’t disclose specific details of the holiday and my sister’s contact details, ‘Sheffield would impose an injunction to prevent us travelling’. My son was 18 and I was being treated like a delinquent teenaged mum smuggling a 3-year-old child out of the country. The constant state of edgy anxiety, caused by Sheffield’s tireless intrusion into our lives, took on fever pitch and white hot rage bubbled in my stomach like lava. In a witness statement, my sister Kathy Terwilliger wrote: “Dawn raised her son alone for eighteen years, preparing him for a full life and independence. “To date, Dawn has never injured her son or caused him undue harm. It is the saddest and most abhorrent display of power I have witnessed in a very long time, but Dawn has a remarkable will and unending strength, as I have not witnessed in another human being. In this fight for her son, for his right to a full and happy life – she has refused to give up.” These consoling words were written some 5 years into the fight, the legal battle which has continued treating me like an unfit, incapable parent.
Sage had a full and rich childhood. Every summer he spent a week at Sense camp – a specialist organisation supporting children and adults with varying deaf/blindness.
In Wales he attended Woodcraft Folk and their camping adventures. At school he went on a field trip to Euro-Disney, participated in a bespoke version of the Duke of Edinburgh Award and went on loads of family days out with National Deaf Children’s Society or local youth groups for special needs.
But, like any young person, he was ready to spread his wings and fly the nest.
Ready to Fly, but Clipped Wings
In his third year at the specialist college I worked hard for two years to get him in when he outgrew school, he became restless and ready for change. I knew what he needed, but wanted the communication to come from him. So, when I asked why the frustration, he signed, ‘move out’! It was as clear as blue sky and at the time others close to us witnessed it. So, with the help of our close friend and support worker, he moved into a flat owned by a housing association, run by a support organisation. However, the support organisation was generic and not specialised for people with multi-sensory impairments (MSI). What should have been a positive step out into the world, quickly became a living nightmare. The night he moved into his flat he was ‘so excited,’ but within two weeks it had turned to anguish, extreme upset and presentations no one had seen before. As a concerned mum, I felt petrified with worry. Suddenly he was ‘controlled’ beyond anything he had ever experienced. Support staff walked directly behind him if he walked out his front door to a room yards away. They constantly peeked into his bedroom if he just wanted to chill. The conclusive response was ‘challenging behaviour’ and the only ones saying, ‘he’s trying to tell us something’ were his college and myself. He would sit in front of his taxi from college to stop it taking him home, and to this day, I don’t know everything he was going through. Ripping his clothes off and peeing over them became a regular incident.
What was happening to my son? How could an angsty, otherwise okay teenager, plunge into such despair and desperation in such a short space of time? During this time when me, the college and support agency were raising concerns, the local authority were absent. They were absent or postponed crucial meetings when Sage was finishing college that were to put in place an Education Health and Care Plan (EHCP), a legally-binding document required for local authorities to implement for 16 to 25-year-olds with special educational needs. While this legal requirement was by-passed, I later found out a meeting had been held covertly, where it was decided my son couldn’t venture into the community without 2 staff. This was in reaction to some of the reckless incidents in town, with his new felt frustration – grasping at any level of freedom he could. What resulted was 5 months of my son not being able to leave his home unless I came to take him out. By the time the local authority got around to funding the new ratio, Sage’s mental health was at critical point.
On my 50th birthday, the 2-to-1 applied, despite Sage being in our family home among friends. So, 2 support workers came to my party uninvited which ruined it and ‘normal family life’ was a thing of the past.
Meanwhile, I had been served with a draconian court-of-protection order, with no explanation. The order immediately curtailed our contact and violated our right to family life and privacy (Article 8 of the European Commission on Human Rights enshrined within the British Human Rights) Act (HRA). It was no longer possible to go out with friends as we once did or go on holiday with our chosen support.
I’ve often wondered who is deaf in this scenario. During all the court hearings, my council would reiterate our fundamental human rights as a family were being violated, but to no reaction by the court. When Sheffield city council were asked if their position was due to my visual impairment, the answer was yes. Had this been systemic racism or misogyny, as is trumpeted daily, there would have been outrage, repercussions – instead, there was silence. Despite Sheffield acknowledging me as a loving mother who showed no evidence of abuse, they treated me to the contrary, like an unfit mother. Unfit mothers have limited access to their children and there was no veiling the culture of hostility or discriminatory approach, by either Sheffield or the support-provider.
When I raised complaints or concerns about various aspects of Sage’s support, little if anything changed, apart from going-through-the-motions of complaints procedures by the support-provider, who works in tandem with the local authority, as this is their source of funding. Yet, when the slightest complaint was raised against me – often twisted out-of-proportion – it flew in court with all the mite of an eagle. If I put my hand on the wrong door in error and quickly walked away I was disturbing the neighbours. The slightest misstep or mistake, particularly stemming from my visual impairment, was scrutinised – making visits to my son an exercise in eggshell walking. No new evidence I gathered on malpractices within Sage’s support counted – the support-provider and local authority are blanketed with impunity. When I was denied permission to appeal the case set against me, the losing streak got longer for us both.
Upon recommendation and after thoroughly checking out everything Exeter had to offer us, I left Sheffield. With a college both for the deaf and visually impaired, there is a wealth of vocational opportunities here. Yet, relieving Sage from the situation he’s in, where he is losing key skills he had learnt at school or college, especially his communication strategies falling away, has been impossible. With no goals, learning options or access to a community of deaf people, my son has spent his adult formative years drifting in dulled monotony or functional stagnation.
A commissioned assessment by a specialist in MSI was written shortly after Sage moved to his flat. The 60-page legally-binding document recommended:
- Orientation and mobility training – he has had none
- A signing environment – he has had little or basic input with no peers
- Technological aids enhancing independence at home – he has none.
Coupled with these fundamental recommendations, a specialist psychologist for the deaf wrote another legally-binding report in 2017. It highlighted how my son might be mistaken for less capable than he is, due to being non-verbal, but he has more potential than is awarded him. Yet, Sheffield local authority and support-provider still cushion his everyday life, and his social or sexual needs are ignored. There is a lot of talk and metaphorical shuffling of feet when I tirelessly point out shortcomings in my son’s support – i.e. ‘okay, we’ll do that’.
In early 2018, a housing association came up in Exeter and Sage fit the criteria. So, the tenants were vacated and we viewed the house in a good area of Exeter – at the time I gave the social worker both the address and photos of the property. However, Sheffield did nothing, the house was lost after sitting empty for nearly 6 months in anticipation of Sage moving in and me putting support into place. When I challenged the social worker at the time, she simply said, ‘she had no idea’ a lie which was never confronted.
The Gag Order
I somehow knew the opportunity for a new home for my son would be sabotaged and when it was, for a time I lost hope. Sheffield local authority has failed my son, his support-provider fails him and so has the judicial system. In my experience, the only ones protected within a court-of-protection order are the perpetrators themselves – those who deny families of their human rights. In desperation, I drew up a petition via the Change.org website, where people at grassroots level can petition for change with little means at their disposal. I soon had a wealth of people signing for my son to be transitioned closer to me, his only family in the country and for Sheffield to ‘do the right thing’. However, Sheffield city council have always been determined to ‘be right, not do right’. I was alerted to the intercepted threat to my signatories of the petition by Sheffield, saying that if they signed my petition, ‘they would be doing something illegal.’ I was forced to take it down.
Our human rights violations didn’t count. The unspoken was, ‘suck it up and swallow it’.
Another Plan Sabotaged
When a 2 bedroom flat came available on the private estate where I live, I grabbed it, with a view for Sage to move in temporarily until he found suitable accommodation and settled here. So, I proposed a ‘plan B’ for transitioning. I laid out yet another proposal, but again, it was ignored and in fact, Sheffield reneged on part of the original court order, specifying Sage’s eventual transition. Sheffield’s reasoning – ‘he seemed settled’. He seemed settled? – was a grossly presumptive statement, completely by-passing any effort to gauge my son’s wishes, who in fact has consistently expressed wanting to move here, with a profound sadness at the distance between us.
Sheffield and support-providers failed to apply the Mental Capacity Act of 2005 within a principled framework, which states: “A person must be given all practicable help before anyone treats them as not being able to make their own decisions.”
Sage originally expressed wanting to move from our family home; he’s asked for my help out of desperation. The fact my son lacks capacity in some respects has meant gauging his wishes is swept aside – giving the system power and control over someone’s autonomy.
In the last year, things have further deteriorated. With severe strains on social care, people have left. Support staff with the necessary skills, emotional intelligence or appreciation for the ‘human aspects’ of the job are precious few. Replacements mostly lack experience of Sage’s specific needs or basic conversational skills. Parades of unfamiliar faces into my son’s home have been unsettling – none of them have been shown how to introduce themselves or basic signing. I have had many confidential chats with support workers – one recently said, ‘new people were just thrown in off the deep end’. So, I don’t blame new inexperienced staff, I blame management for filling vacancies, rather than taking a qualitative approach.
Sheffield city council and Sense support-provider have collectively been hellbent on holding my lad to ransom, depriving him of life-enhancing opportunities, specialist college placements, vocational opportunities and a home in the south closer to family. How much more will my son lose under the smokescreen of ‘best interest’? Shortening my visits to maintain routine – a stance taken by his support-provider – has never added up, as Sage manages his own routine. At any rate, how is routine more important than family? Any support-provider using routine as a guise for stifling family contact is not fit for purpose! Holding my son back from progressing is nothing short of systemic abuse and the judicial system has mandated it.
It’s open season on the truth and human rights. This piece has taken courage and dogged determination to write – yet, when every avenue I’ve tried has failed in liberating my son or my own human rights as a mother, the cathartic release is long overdue. Absolutely everything addressed in the above pages has been thrashed out in court, Multi-Disciplinary Meetings (MDTs) countless witness statements and reports I’ve written – but is becoming public. Both Sheffield city council and Sense support-provider were approached for right-to-reply, but declined. It has been a long, hard road to mostly walk alone. I’ve been alone when solicitors failed to hold the local authority to account, when I’ve approached small charities who couldn’t help, when I approached dozens of solicitors over a year, only to be failed when I thought I had a fish-on-the-line. Sage has walked alone, when no one asked his feelings in expressing his emotions or anguish, when I can get on a train, but he’s trapped there, when other young people with additional needs see friends or go on holiday with family.
Another hearing is over a year overdue and the bullshit my family has endured for 7 years continues festering. Corruption, discrimination and a clandestine culture of demonising me for speaking out on behalf of my family has led to a ‘hostile environment’ against redress, the independence and autonomy we deserve. No gag order this time – I’m not shutting up until my son is truly liberated.