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Mr Sad from Sadfordshire

August 30, 2013

Such a sad time at the moment.

Steven got banned from Virgin Active yesterday. he started to have a meltdown just as they arrived and hit out at one of his friends. I wrote recently that a couple of the women from the water aerobics group had started a petition to have Steven removed because of the noise he makes in the cold shower. I guess that Steven unfortunately, gave the manager the ammunition he needed to instigate a ban.

This post isn’t a criticism of the club – the manager has made a decision and that’s that. He may have made the right decision – he may have been a bit more tolerant and negotiated a trial period. I don’t know. Even one of my closest friends text me last night to say: “I’m with the gym on this one”. So, who knows? It’s done now.

My sadness is that it brings about another loss for Steven. When we run through his timetable for Tuesdays and Thursdays, he reels off a list of his friends that he is looking forward to seeing there. In particular, he is very close to T, the guy he caught yesterday. Despite a 50 year age difference, Steven has built a phenomenal relationship with T in the five years he has been going to the pool. Every year, T buys him a Christmas present and back in 2010, without asking, T wrote a testimonial of Steven for the court case. We spoke on the phone this morning and he was really upset by the ban and asked me if he could still pop over to see Steven at Christmas. Writing that brings a huge lump to my throat.

But for all his other friendships at the club – they’re finished. And that has been the pattern for most of Steven’s life. Neighbours move away; support workers leave abruptly – it’s that awful situation that we all experience in life where someone is more important to us than we are to them. As the day has wore on, two of Steven’s other friends called me to express their dismay over the ban. One told me something very interesting that I’m sure fed into the manager’s decision. He said: “We were talking and obviously Steven is getting more difficult if he needs three workers with him”. We’ve had an extra worker this week because it’s a new guy on induction for two weeks. But an assumption was made, and a helpful assumption in justifying the position.

There’s also a terrible ache about the massive difficulty for Steven to take his place in the community. Last week, I wrote that a learning disabled person doesn’t enter the community from the outside – they are the community. But it’s hard to be part of the community, if some members of that community are hostile to you and don’t want you there. I’m sure the women from the water aerobics group’s lives are much cosier now they don’t have to experience Steven shouting when he gets under the iced water bucket. From a cold shower to a cold shoulder in 24 hours. It all leaves the unanswerable question for me – how does Steven carve out a place for himself in the world? Do we take the Hillingdon line and lock him away for fear of what he might do? If not, how does he find his place?

I got the ban letter from Virgin Active when I got home tonight. Steven has breached their club rule that applies to getting drunk and starting a fight. Don’t really know what to say to that.

Tonight, the Mencap pool reopens. It is the safest place in the world but it doesn’t count in the context of this post. Sometimes it can be chaotic there but there’s always a tolerance there. And a humanity. And nobody judges. But that’s a very tiny oasis for two hours, twice a week – the rest of the week is a tightrope of tension as we navigate the “normal” world.

When I spoke to the manager at the club yesterday, I found myself telling him how Steven’s anxiety about the move/non move has been increasing. In the last week, the anxiety has started to seep out from the night times into the daytime. Steven is needing extra reassurance before he goes out of the house that he’s coming back home and not going to be carted off to the unit. I stopped myself short though – he wasn’t interested. And perhaps the manager and my friend are right. Perhaps one man’s anxiety is irrelevant in the greater scheme of a swimming pool community living an undisturbed life. In disability law, we have “reasonable adjustments” but as events at the club have shown. some adjustments are too unreasonable for some. It won’t ever change, so that’s why that sort of pain, that sadness, that loss will always be present in our life.

I was going to end there but on the way home from work I nipped into the cafe for a coffee. At a nearby table was a disabled woman in a wheelchair and her carer. The disabled woman was eating a poached egg on toast in a rather haphazard manner. Two women on the table, kept tutting and rolling their eyes and eventually called the waitress over and asked her to move the woman and her carer. The carer was brilliant and pointed out that if they were unsettled, perhaps they should move. That only served to outrage them ever further and then my bus came, so I don’t know the outcome. But it struck me as familiar.

How do we live together?


From → Social Care

  1. sparrow permalink

    Hi Mark – I know that feeling of rejection only too well. It’s so sad and so hurtful. As you say, people who won’t take the time to get to know you but act in their own selfish interests. We can become isolated from the community or parts of that community. I hope many read your eloquent post and take it to heart. There are a lot of kind, generous people out there so take some comfort from that. Unfortunately for the likes of us with autistic children and for others who aren’t quite “the same” there are a variety of others who should take a good hard look at themselves.

  2. Paul permalink

    You will always get ignorant, closed minded, selfish, people in this world. Hearing this story makes me so angry and I hope things start getting better for Steven. These so called human beings don’t understand what stresses and strains carers and the individuals who have autism or any special needs go through. They have no compassion they are just scum!!

    • Paul – my point in the blog though is that these people are human beings and dont have to show tolerance. It amazes me that Steven has built the relationships there that he has. But he’s very instinctive – why, out of the 100s of people he has seen there over the years, has he chosen the dozen or so, that he sees as friends? I’m sure it is because they have shown an interest in him and he has reciprocated.

  3. Sanctimonious piece of shit……..[sorry]………I am basically sick to my stomach listening to peoples Pius comments about our kids.

    Steven makes noises and has a melt down – yes – he has Autism – so whats the problem…..what happened wasn’t premeditated……. to ban him from the swimming baths is outrageous and sorry Mark I do not agree with your friend.

    What happened to understanding – empathy – compassion……all the manager wanted to do is off load Steven……….. what happened, Steven had no control over………..the manager has made Stevens world very small …….which will cause more anxiety and stress…….

    People – the public – the system are all to quick to pass comment when they know jack shit about our kids or Autism…….every day our kids lives become smaller and smaller not because of us the parents but because of the intolerance shown by the public and the system.

    And as for the women in the cafe ………

    May be an idea to ask an FOIA how many other disabled adults the Manager has banned……….. there may be a pattern.

    This has upset me as you can tell ……….but I have an idea – all the day centres that have been forced to close throughout the country – open them up as gas chambers and gas us all…….because we are surrounded by Nazi ……………

    My heart is heavy for you and Steven

    Sorry if my comments offend people – but walk in our shoes then you may understand why we get so upset ………… try and see the tears behind our eyes……………


  4. Mark, your description of the Mencap pool and the difference there to the ‘tightrope of tension’ in the ‘normal’ world describes perfectly the reason why so many folk are so distressed at losing their day centres. They could see their friends there in a part of the community which did not judge or criticise. They were accepted and befriended, whatever their particular differences, whatever noise they might make or not make. Whatever difficulties they may have been facing elsewhere, they knew they would be welcomed and accepted in the day centre and could just relax and be themselves there.
    The Powers-That-Be decided that all these people really needed was to be mixed into the rest of the community and in doing that they believed they would be accepted (well, that was their story, but I feel it was just a cost cutting exercise). They said it was all the people who had advocated in favour of day centres that had got it wrong. According to the government the day centres had formed a ‘segregated’ society (not actually true as on most occasions people were out and about with their mates with appropriate support, merely using the centre as a base and meeting point) and so the comfort and pleasure of the day centres was whipped away from under them like a rug, leaving people without the company of friends they had made over the years and a sadly empty lifestyle. The Powers-That-Be have never had to face the stares, the sniggers and sometimes the outright aggression of the community that the people we care for so often face.
    We witnessed the impatience and annoyance of the wider community when taking people out on day trips last week. Two ladies became very rude because of the time we were taking getting off the boat we were on as we were slowing them down, and a number of incidents of pushing and shoving in queues at a theme park, the worst of which resulted in the white stick of a partially sighted lady we were with being accidentally kicked out of her hand and her hat knocked off, just because someone was in too much of a hurry to walk behind us at our slower pace. When these incidents occur it is frightening and there is a build up of tension before any further venture into the wider community, a tension felt not only by the people we care for but also by us as their carers. The complaints from other members of the Virgin Active centre must have made this a more anxious trip for you all and, added to the other tensions he has been struggling to cope with over the last months there is no wonder Steven had a meltdown in that particular place. I just wish the manager there had had a little more empathy and understanding. Sadly I am not sure there will ever be a day when the community will be wholly accepting of people who they see as ‘different’.

  5. Tristan Wood permalink

    It makes me a tad sad that people still have this attitude. I work with people with autism etc so I can detach from some of the emotions people with family members with autism etc, but I would like to say one thing – big up the carer for the lady in the wheel chair. After reading what was quite sad, that made me smile (somewhat ironically) but it shows that some people at least have the right idea.

  6. Mandy, you make the point so well. It echoes what has been happening in schools with ‘inclusion’. The powers that be decided to close many special schools and push children with additional needs into mainstream classrooms. So much heartache for those children and their parents – yes there are some children who can cope with help, but many can’t and the help is not always available. The right environment is so important. The result is a limited choice – struggle in mainstream or home school?
    Social experiment on a grand scale or cost cutting? It doesn’t really matter, the damage is already done.
    And I haven’t even mentioned the demonisation of anyone on disability benefits…

  7. Yvonne smith permalink

    OMG I have actually found people I can relate to… son is 17 and has severe learning difficulties….life’s hell and then there’s social services who make it just that bit worse!!!!
    From…’he needs meds’…to ….’you are not accepting our services’….I’m sick of it all and don’t know which way to go next for the best for my son…he hates college and their routines and wants to be at home, ss are saying he can’t…what to do?????
    We had to sell our house and move after living there for 22 years because of hate time …now we live in a rented house in the country…wanting somewhere quite for him to chill and now we are so isolated here….it’s a roller coaster of life.

  8. If certain centres exclude people with learning difficulties and challenging behaviour they should declare it. A hushed chat or a letter cancelling a membership prevents others members/customers from expressing their wishes. The people who complain are a noisy minority. I think the overwhelming majority would spend their money elsewhere if they knew Virgin active excluded Steven.

    I take a noisy good nature bunch of adults with learning disabilities who can present challenging behaviour to local pools. To start with it was at the LD session as it was free. But the sessions are only an hour long and we often run late. I can’t fault the staff they let us in free even when we are hours late. The public are great too. They ask after the guys if one stays at home, interact with the guys happily, even when they’re swim is interrupted when they are screamed hello at every length. It’s not all plain sailing, carers get the occasional love tap, once the other swimmers’ towels and bags of clothes got thrown into the pool, everyone is understanding and there was no question of a ban.

    I think that Mencap do wonderful things and by nature of the organisation are tolerant of challenging behaviour but am becoming more uneasy about gearing all activities around specialist LD day services. There’s a whole world out there for the guys to explore. I’ve found council run/financed centres are also tolerant, positive environments too. In the six months I’ve been working in social care I’ve had two negative experiences with a venue owner/manager, none from the public. There have been countless positive experiences and I like to think the general public’s days are all the richer for our presence.

    Tweet @RichardBranson and see what his take on things are. Someone from our uni rang Virgin and got out through to him, by all accounts a good bloke. I’m sure if he knows that Steven is supported by the right staff he’d be happy to have him at the gym.

  9. duncfmac permalink

    Nicola, Mandy totally agree with what you are saying. I really hate “laudable” concepts being forced on people where the agenda is money saving and a cover up of inadequate resources. The whole idea about shutting centers for people with disabilities just isn’t working. Where I live you now have groups wandering around depressing shopping malls accompanied by under paid carers who have to pay for their own coffee (and so very often sit and watch their “client” have coffee) before continuing their tours of depressing local amenities! My autistic son was steered towards an unsuitable mainstream school option because there was no alternative and I was made to feel that I didn’t want him to be included in the community! The way society treats the vulnerable among them speaks volumes about the societies we live in. The concept of working hard at a shit job giving you credit and status in our society is a myth put out by the government of the day and has produced a resentment in people generally about helping and embracing others.

    • Yep, those shopping trips drive me mad duncfmac! Shopping with little or no money to actually spend so they are actually just killing time, or a trip to the library, in fact anywhere warm and dry and FREE! They used to learn really useful skills at their day centres, things that would help them in life or give them an additional skill or hobby to enjoy in their free time. So sad that this is now disappearing fast into hubs with even the best staff struggling to fill a day as they have no facilities other than the basics in them. And they have a knack of making you look as though you are trying to ‘segregate’ or ‘over protect’ the person you are caring for until you start to doubt your own motives!

  10. Lorraine Roberts permalink

    Dear Mr Sad
    Your blog made me cry…….I have been following you for a few weeks now and I feel compelled to read and compelled not to!,,,,,,,The reality of your life is knife edge stuff and I find it hard to read…as a single parent of an eleven year old severely disabled autistic son…I try and plan and be positive about his future…and imagine a lovely life in supported housing with ” friends” …and that hope keeps me going through the current hardships…..fighting for respite….summer holidays with only 5 nights respite…I feel wiped out! You hope it will get better …but the reality of your story and other people’s makes me feel exhausted…and I am nowhere near your journey…
    Interested in your reports of rispiridone and huge weight gain…my son has gained 4 stone in two years but the thought of life without it is not ever an option if we are to stay together….still intense, anxious, obsessive, but I know longer have hours of head banging, broken windows ( though my toughened glass would hopefully stop that now) less bruises and public meltdowns….!!!!
    Your story of Virgin Active was so awfully shit for you! Find a good place…but sadly a place where the middle classes and those with a few quid feel they can relax in an exclusive club….great facilities which doesn’t include anything that questions their comfortable lives…especially not those ‘wired’ noises or ‘odd’ behaviour that challenges their status quo ….I hate those bastards!!!
    Your struggle is not only gobsmacking but truly inspirational…..
    All my thoughts…and just wish you mountains of energy in your ongoing struggle..
    Good luck
    Lorraine x

  11. Maybe if somewhere like Bannatynes hosted the hubs….

  12. Denise Best permalink

    Hi Mr Sad I feel your pain I am also a parent of an Autistic child whom at times can be very vocal even being none verbal we too experience cruel looks an comments from ignorant people whilst he enjoys the exciting experience of a ride on an escalator or in a lift. I’ve hardened to this now as it is those people whom have the problem not my son. We are living in a modern world now and these things should not be happening. It’s like when the very first time you see a black person you look then turn away why are people still staring at our special children
    Take care of yourself and Steven
    Denise x

  13. Joe Akers permalink

    Hi mark . I read your blog and often… It keeps me going to know there are still people that care, no matter how dark the world is. often it makes me laugh and sometimes … like this one cry. I feel angry and sorry that the world has to (?) be like this. Thanks or being a good bloke. Joe

  14. Karen permalink

    I like the idea of contacting Richard Branson! I then like the idea of Stephen going back in and giving a high five to the ladies in water aerobics!! 🙂

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