Meet Mr. Matty.

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#justiceforallthedudes, adult LD services, care in the community, intellectual disabilities, learning disability, true stories

Today, I have the honour to introduce to you, Mr. Matthew ‘Matty’ Brandon, aka ‘Mr. Smiles’.

Matty grew up in Saskatchewan, with a couple called Chris and Shannon Gardiner, who have looked after him ever since he was a small boy. Matty has multiple disabilities, including cerebral palsy and autism. He is non-verbal and needs his routines. So as he approached adulthood, Chris and Shannon devised a life for him where he could continue to live at home, attend a day programme, and get family-based respite care at weekends, to allow them to have a break and to broaden Matthew’s base of support. But in 2012, when he was 21, Saskatchewan Provincial government agencies decreed that as an adult, Matthew should move into residential care in a group living facility for people with intellectual disabilities.

The Gardiners fought long and hard to keep Matty out of the group facility, which they knew would not cater for his needs, and with which he would not cope. But they could not stop the State juggernaut. Matty was to be removed from the only home he could remember and dumped in unfamiliar surroundings with people he did not know and whom he could neither understand, nor induce to understand him. However, after Matthew was injured, physically and psychologically, during the transition process, the Gardiners put their foot down and kept Matthew at home.

Saskatchewan responded by cutting off Matty’s funding. The Gardiners, enmeshed in a bureaucratic nightmare, strapped for cash, but determined to give Matty a good life, began looking for ways to keep him occupied for free. They also began building an online community for him, as well as an offline one. They found their local library, which was good – interesting but not too noisy. They set up a Facebook page to show all the things that made Matthew’s life enjoyable and worthwhile. Then one day they discovered that their local Royal Canadian Mounted Police Depot Division – the Mounties’ cadet training school – held a ‘Sergeant Major’s Parade’ every Tuesday, which the public could view. They were not sure if Matthew would cope with all the noise (the parade involves a brass band), but they gave it a whirl. And Matty loved it.

Soon, the parade became the highlight of Matty’s week. He would video it on his iPad and play the videos over and over. Fair play to the detective skills of the RCMP, it did not take them long to clock that the same striking-looking, tall, burly young man was turning up to every parade and paying the closest of interest. And having noticed him, they began to ask questions, then think about what they might be able to do to enhance his experience. First, he was invited to meet individual Mounties. Then, at the end of the parade, he was invited to tag along at the back, escorted by a couple of senior officers. The Depot staff would give him occasional gifts of RCMP memorabilia. On his 25th birthday, bursting with incredulous pride and wreathed in the widest of his famous smiles, he was made an honorary cadet, with a full uniform specially tailored for him.

Then he got to meet the horses of the Musical Ride. Not only has Matty been having a whale of a time, he has also, just by showing up and joining in, educated a generation of RCMP recruits about interactions with people with learning disabilities. Like Steven Neary’s contribution to UK Human Rights law, Matty’s contribution to Saskatchewan civic life should not be dismissed or underestimated.

After several years of intense negotiation, the Gardiners succeeded in – well, I’ll let Chris tell you:

“Matty now receives SDF (Self Directed Funding), has his own agency and we were able to define and create delivery on what you see here on the page year round. Something “Person Centered” and a life plan that works for one of Saskatchewan’s most vulnerable citizens. We are thankful for this, only wishing it might have been easier a process in working with the system but are hopeful that the work put into Matty’s file makes it easier for others of similarity in the future to endure less trauma and challenge moving forward where transition planning occurs.”

With a framework of the predictable, Matthew is able to cope with the occasional surprise. The Gardiners continue to introduce new experiences at intervals. Matty has two friends, Sami and Nick, who take it in turns to host him in their homes at weekends, to give the Gardiners a break and to ensure that when the day comes that they have to step back from caring for him, there are other, familiar people around who can pick up the baton and run with it. Matthew’s online community continues to grow, which is an important part of securing his future welfare, as in State care he would be subjected to a draconian ‘confidentiality’ regime that would obliterate him from view. While the Depot parades have been a highlight of Matthew’s week, the regular posts about him, with photos and videos of him enjoying his time at the Depot, have been a highlight of mine for years now. Do mosey on over and make his acquaintance here. It’ll brighten your week too.

Matthew still needs all the support he can get. Chris reports this week that:

“With Shannon away for a visit with her family/friends in her home town … and with me requiring a bit of focused time here at home with “must do” projects, our special man spent a couple extra nights away at his friend Nick’s. This time apart … replenishes all of our energy levels to a workable place and is why we designed it to be family focused, with us, or apart from us with friends he has built trust and harmony with. The goal is to make it so fluid that we all become interchangeable units of the same body, a transitional reality that needs to be in place in case any of us fall from ability to serve Matty’s best interests at any point in time. Both Nick and Sami have been along for the ride, a roller-coaster at times, and both have built beautiful trusting relationships with Mr Smiles, adding to this wonderful thing we have so carefully put in place together. Tonight I celebrate this irreplaceable effort but condemn a recent development which has created disharmony to it by an apparent policy glitch someone seems to have made their mission to see through. If they got their way, Matty would have to part ways with both Sami and Nick, an outcome that would be so very contrary to all the work both have put into the SDF project and Matty’s “Person Centered” program. As we have been through this before, we will not tolerate some arbitrary bureaucratic interference which ends in reckless harm where Matty is concerned and is why we are dropping this potential risk here with our many friends in case we have to fight back after it has gone too far. “

Sigh. It seems that Whistler’s Mother’s twin – or possibly clone – is alive, and well, and acting the interfering old trout in Saskatchewan.

Weatherwise.

Tags

intellectual disabilities, true stories, voices of disability, voluntary organisations

A tihirty-five mile trip at ungodly o’clock this Sunday morning, to an outdoor pursuits centre where Grenouille and friends from the disabled sports club were competing in the regional heats of a national competition.

“Lots of layers”, said G’s Papa, who was staying behind to keep Eldest company through AS science revision.  “And waterproofs, and take the golfing umbrellas for when you’re standing around. The forecast says bands of heavy rain.”

As we drove down the motorway, G asked, “Do you think it’s going to rain?”

“I don’t know, love.  I think it was sensible to pack all the waterproofs.  It does look a bit threatening, there’s some dark-grey clouds to the north-west, and as Papa said, the forecast is for rain”.  Under my hands, the car’s steering wheel vibrated as a buffeting side-wind tried to push us into the outside lane.

“I don’t believe the forecast”, said G, in a tone of bright hope.  “Half the time they say something and it turns out totally different.  “

“Is that right?” I said, rather vaguely, one eye on an articulated lorry wobbling to my left, and the other checking out the Beamer roaring up behind me as though keen to get close enough to check whether the inside of my exhaust pipe had been cleaned recently.

G snorted derisively.   In a voice dripping with scorn: “I don’t think the weather people know what they’re talking about.  I’m not listening to any of that old nonsense.”

To keep the wind out, we wore our waterproofs all day; but it never rained.

Agnes and the infantry

Tags

babies, care in the community, institutions, intellectual disabilities, mothers, schoolroom centre stories, true stories

Not long after starting at the village school, I came across a new insult:  botley.  Judging from the contexts in which it was used, it was evidently the supreme slur; but I found it incomprehensible.  “What IS a botley?” I would ask, only to meet the jeering response, “If you don’t know that, then you’re a botley yourself, nyah, nyah.”

It was some time before I found out – from my Dad, who had known the area in his childhood – that this epithet referred to what was then Botley’s Park Hospital, but which had been founded in the 1930’s as Botley’s Park Colony for Mental Defectives.  It appeared that local children had understood “Botley’s Park” as “Botleys’ Park” and concluded that an inmate was therefore ‘a Botley’.

Dad also explained something that had long puzzled me: that when a bystander in the London street scene in The Magician’s Nephew refers to the Empress Jadis as “the h’Empress of Colney ‘Atch”, he intends it to be inferred that she is deluded; Colney Hatch in North London was the home of the largest lunatic asylum in Europe, drawing inmates from the whole London area.

At the schoolroom centre, the phrase for admission to the local psychiatric hospital – still referred to as ‘the Asylum’ – was ‘being sent up the road tae Rigg’.  ‘Admission to’ was still an euphemism for ‘incarceration in’ – the place was isolated from the city, set far back from the road, screened by walls and dense planting.  It was one of those Victorian affairs of solid stone, with cone-topped turrets and crowstepped gables and if you wanted one word to sum it up it would be, ‘bleak’.  The word ‘Rigg’ connoted imbecility, madness, and a lingering whiff of sexual revulsion, since many of the Victorian inmates had had the underlying condition of tertiary syphilis.

Thankfully, people with mild or moderate cognitive impairments were no longer sent long-term to places like Rigg.  Instead, they were set up in Council flats as small, mutually-supporting groups.  For Agnes and June, it seemed to be working well.

Agnes was one of the older ‘trainees’ at the schoolroom centre.  She was tiny, trim and energetic, with thick, fractured-ice-white hair that I think must once have been an intense red, and summer-sea-blue eyes. She shared a flat with June, the youngest ‘trainee’, who had moderate physical disabilities resulting from birth injuries that had caused cerebral palsy.  June took care of admin, shopping lists, budgets, forms and writing; Agnes cleaned, cooked, fetched and carried.  They did their weekly shopping trip together, June counting the money and Agnes carrying the bags.  They had complementary personalities, too. June was somewhat highly strung and prone to fits of exasperation; Agnes was mostly serene and accepting.  But on the very rare occasions when Agnes was in a tizz about something, June could be touchingly understanding and protective of her.

Going on the shopping trips with them was one of the perks of the job as far as I was concerned.  They would bicker amiably beforehand about their menu (“Stovies again!  I’m scunnered wi’ you an’ yir stovies!  Can we no’ have somethin’ else this week?”  “Ah like stovies.”  “Och, you’d eat them till you turned into stovies!  Weell, just so’s I can have chops one day…”)  and have friendly arguments in the aisles about branded versus non-branded goods, but they also noticed what was happening around them and would treat you to a highly entertaining running commentary of their observations and opinions.  They were well-known in the area, and the shopping spree was likely to be enjoyably prolonged by bumping into a neighbour who had time and inclination for a good blether.

For Agnes, the highlight of any trip was meeting somebody with a baby.  Agnes loved babies, and would peer under the hood of every pram we met, make enquiries of the pusher as to their relationship to the infant, go into details of its name, age, weight, temperament and development.  She would coo over the length of the baby’s eyelashes, the cuteness of its wee button nose, comment admiringly on its bonnie hair or rosy cheeks.  Agnes could always find something to admire in a baby, no matter how bald, bawling, spotty or snotty. For her, there was no such person as ‘a baby with a face only its mother could love’.  Finally, she would take a silver coin from her purse and make to lay it in the pram, then turn and present it to the adult, saying, “Better gie this tae ye,” and then to the baby, “We dinna want emb’dy eating something they shouldna, dae we?”  This ceremony of the piece of silver – “for luck” – was Agnes’s way of bringing the encounter to a graceful close, and we would walk on, while she said happily, “That wis a bonnie bairn, wis it no’?”

“Yes, Agnes, very bonnie.”

No-one seemed to mind being accosted by Agnes.  Diminutive in her smart, neatly-belted, going-for-the-messages coat, a headscarf tied under her chin to keep the white hair in place, and with her gentle, innocent manner, she had something of an air of everybody’s favourite grannie about her, with a slight suggestion of fairy godmother when it came to the presentation of the coin.

The powers-that-were decreed that Agnes and June should move into a larger flat, in order to accommodate a third ‘trainee’, who was being decanted from the residential home.  Now that the ‘Asylums’ were emptied of inmates, the Care in the Community policy had moved on to shutting down these smaller places.  The ‘hostel’ was a bright, warm, cheerful place that rather resembled University Halls of Residence and it was already about half-empty.  Their social workers took Agnes and June to visit the new flat.  On her return, June was volubly unimpressed.  The place had apparently been inhabited by a group of men, who must, said June, have been the clartiest beasts in creation and have reeked like lums into the bargain, since everything stank to high heaven of cigarette smoke.  Social Services, applied to, declared that they were prepared to supply paint for redecorating, but stipulated that the women would have to do the painting, and any cleaning, themselves.

Agnes came into the centre on the following Monday morning in a state of near-collapse.  She had apparently spent all weekend trying vainly to scrub the new flat into an acceptable state and was almost incoherent with mourning over the impending loss of her present ‘hoose’ and her fears about being harried into the other one.  The centre manageress went to see the flat, and came back nearly as incoherent as Agnes – reporting that it was filthy, the carpets sucked stickily at the soles of your shoes, and the fag-smoke was impregnated into everything, including the wallpaper.  There was no way that Agnes, as the only fully able-bodied prospective tenant, could sort it out for the other two.  And Agnes had already been put at risk – in an attempt to remove the nicotine glaze from electrical fittings like light switches, she had been washing them with soap and water.

“It’s God’s own mercy she hadn’t blown every fuse in the block and electrocuted herself forbye,” said the manageress, heading for the phone and a rant at social services, while I sat trying to comfort Agnes and June.

Agnes suddenly spat, “Ah’m no’ going there again till it’s sortit.  Ah’d rather be sent up the road tae Rigg.”  June protested, but Agnes just kept repeating, “Ah’d rather be sent up the road tae Rigg.”

Eventually, Agnes took herself and her indignation off to the lavatory, whereupon June burst into tears.  “She’s aye said that Rigg is the worst place in the world and she’ll niver go back.  How bad must she be feeling, tae say the likes o’ that?”

It was a horrible day, and after the manageress had threatened and cajoled social services into agreeing to have the flat professionally redecorated throughout, and after we had given the news to Agnes and June, and calmed everybody down as best we could, and after the ‘trainees’ had left for the day, we staff all sat around for half an hour, drinking strong tea and venting our own feelings.

“I didn’t know Agnes had been in Rigg,” I said.

One of the other care workers pursed her lips.  “Agnes has on’y been livin’ in toon fur ten years or thereaboots.  Ma mither’s freen’ used tae work up tae Rigg.  Agnes wis in there maist o’ her life.  Naeb’dy kent wha did it, but someb’dy got her pregnant when she wis fifteen, an’ she wis pit awa’ fur bein’ whit they ca”ed a moral imbecile.  It wis awfy sad.  They took the bairn awa’ fae her, o’ coorse, but he wisnae the fu’ shillin’ himsel’, an’ when he wis tae auld fur the bairns’ hame, he endit up in Rigg an’ a’.  Ma mither’s freen’ said it wis the saddest thing iver, tae see the twa o’ them sittin’ at the same table, an’ them no’ kennin’ that they were mither an’ son.”

I thought of how much Agnes loved babies, and I thought of her kindness and the innocence of her forget-me-not eyes.  I thought of the love that she would surely have given to her boy, had she been allowed to bring him up herself.  I thought of how much better he might have done for being brought up by someone who loved him, even someone who wasn’t ‘the full shilling’, instead of being processed through an institution.  I thought of the light-switches and the soapy water, but I still thought that with a bit of support, Agnes would have made a fine mother.  And I thought of the systems that punish the vulnerable for their vulnerability, and I felt sick.