Centre 404 – Our Heart’s Centre

This beautiful reflection on our Centre 404 building was written by our Chair, Jean Wilson OBE in April 2017. We thought it would be relevant and poignant to share following the completion of our final phase of renovation and refurbishment works that has future proofed our building, our community heart centre. 

Our world stopped when we were told that our beautiful daughter would have profound physical and learning disabilities, and would need total support all her life.  Then began the struggle of finding our way round in another land, with a different language, rules, and people – and we knew no one.  My family really struggled, until we found Islington Mencap (now Centre 404).

Ask any family carer what Centre 404 means to them and most would start by telling you the exact time, location and by whom when they first were told the life changing news that their child would always be disabled, and how this affected their family.  They would then go onto tell you just how they found Centre 404 and what effect it has on their lives.

But was it really forty-seven years ago that I first entered this doorway?  Then it was a very different place, just one scruffy damp smelly room in a huge building let out to others.   I remember the feeling of being very scared, lonely and terrified of the future, and all I wanted to do was to talk to other parents in a similar position. This did take some time, but eventually I found others who were able to talk and share our experiences, and this gave me great comfort.  Skip forty plus years but I still remember those feelings of being so isolated, angry and lonely, and seemingly unable to function until I found the safe haven and life jacket of my heart’s centre – Centre 404.

Coming through the door now is so different, with our special disabled friendly entrance, the bright, beautifully designed ground floor with its suite of rooms, including a Changing Places toilet, which I show everyone. Our friendly receptionist Dawn with her welcoming smile, so eager to help you in any way.

Looking round me, I still get a buzz from this place, and all that it means to people with learning disabilities and their families. In reception, our old leather sofa could tell some tales as it sags with constant use.  Often scuffed by children and adults who know no limits or barriers when jumping on it! It still comforts you whilst you wait in hope.  Hope that someone will know the initial despair and shattered dreams of having a learning-disabled member in their family.  Hope that you will be given something to hold to, someone to tell you, you will cope. Someone who will just listen and offer help.

The pictures on our walls shout with joy and pride with our members’ celebrations and successes.  Our Wall of Fame proudly publicises just how successful we are at delivering high standards of care to our community.

There is a buzz of being so glad to be here in this much-loved centre, where wishes and dreams alongside tragedies and disasters are truly shared by people whose lives are so different from everyone else.

Walking back into the garden room, the windows are open and bird songs and cut grass waft into the room, and float round an anxious mum waiting to spill out her heartache and despair.  She is too anxious to notice the bright spring morning. I ask her if she is being helped, as my heart goes out to her silent sobbing.  Wiping her face, she struggles with my question, but says yes and something like ‘tea’, and ‘sorry’ for her tears.  I say, do not worry I too have shed many tears in this place, but someone will help you.  She grabs my hand and puts my hand to her forehead and then kisses it. I smile and turn quickly as my throat constricts, and tears fill my eyes.

I walk out into the lovely garden, which forty years ago was a mud patch. I walk up the gradual slope, with its rough bricks, and round bronze hand rails, trailing edible plants –  so satisfying to feel when you are in a wheelchair. I look at the well-established trees, some planted in memory of our people long gone and the spring flowers bursting with brightness. The grass has had its first cut, and will soon be ready for the running and playing of our children who are never still.  In this garden, with its one entrance, they are accepted for who they are and are safe and secure, and can run and shout and not be stared at.  I walk up to the back and sit on our white cast iron bench, and read

‘Victoria’s Bench Sit and Rest for a While’. For this is Victoria, our much-loved daughter, who sadly died three years ago, and its where we sit and think of her.  Looking round I see afresh what an oasis of peace and tranquillity for our community this beautiful place is.

Someone calls me, and I shake my head out of my revelry.  Coming back from the peace of the garden into the reception area I am almost overcome with the level of noise. Constant phones and door buzzer going, people leaving and arriving, greeting each other with exuberant joy.  Workshops, meetings, Day Opportunities centre – this is a very busy place.  I smile and touch one of the Objects of Reference. In a small frame, next to the exit to the garden is a patch of artificial grass.  This is a tactile object that says Exit to Garden, and is for our people who have no formal language, and can only communicate by feeling, looking and their body language, including eye-pointing. Another personal memory for me.

Savaas pulls me into the meeting room, he is gesturing madly, but my Makaton (sign language) is poor and he gets frustrated. It seems the volunteer gardening group, all people with learning disabilities, need to know about the proposed plans for the Garden Project which will be a wooden tree house and slide at the top of the garden.  Ian, their leader tries patiently to get them to talk to me one at a time.  Language, confidence and self-esteem have to be worked hard for everyday for some in this group, but gradually I learn that they need re-assurance, and I tell them that their own vegetable patch will be safe in the new plans.

I walk slowly into the hall, and the magical music of Mozart tantalizes and teases the young girl’s ears, as she slowly lifts and turn her head to where the music is coming from.  Her body, trapped in its inability to move or even communicate in her wheelchair, the music touches her soul and she smiles. We are In the Day Opportunities hall where lively and languid people come together, where joy and laughter is shared between staff and members. Everywhere there are things to feel, touch, sniff and look at.  I stoop down to pick up a huge feather that has dropped from MG’s lap, and as my head comes up, my eye is caught by a small wooden plague on the wall.  It reads ‘In Memory of Moshe Nurtman’s family who died in Treblinka’. A salutary reminder to me too, of all those people with learning disabilities who were systematically killed in the holocaust. The Nurtman family were the first to donate to have our original hall built in the seventies. We must never forget the memory of the past and all it means.

Time to leave my much loved centre, and as I walk down Camden Road, into the roar and acrid smell of the traffic,  I look back at the front of Centre 404 and think, this is our place of safety, a haven, an accepting, non-judgemental and tolerant place. A place of shared experiences and common goals.  A place that gives hope and purpose.  Where individuals and families can be themselves, and relax.  Where we can share our dreams, hopes and wishes.  Where we can mourn. Where we can share the difficult times, and together enjoy the wonderful times.

Jean Willson

April 2017