Boxing magnificent, boxing clever

Magnificent

 

• "Never feel sorry for me" •
Reflections on Muhammad Ali by some who knew him well.

Clever

In this footage from 1991, the cringe-making tone taken by the interviewer is in clear contrast to Muhammad Ali’s response, full of humour, dignity, and thoughtfulness. I look forward to listening to it enough times to be able to decipher the words before his final riposte: “Got ya!”

And the rest of us?

There are creative initiatives around, some of which can be found on • show|me|the|access • website, like these • Rock Steady Boxing • fitness classes which use boxing techniques in the context of Parkinson’s to improve confidence and physical well being. More submissions always welcome (hint).

"IN THIS CORNER, HOPE"

It puts me in mind of a chap I saw the other day who had taken up amateur boxing very briefly in his youth, in the East End of London. Now in his late 80s, he too has Parkinson’s, alongside other diagnoses, and is in hospital, but because of the clinicians’ difficulties in understanding his speech, his care is in danger of not being as responsive as it might be. His fluctuating condition means he has been moved a number of times in the last weeks, with each move resulting in a different set of people involved in his care. When it was suggested that a microphone could be used to help facilitate communication the clinician readily went to fetch a microphone and headset but instead of putting the microphone on the patient, whose voice is very quiet because of the Parkinson's, the headset was put on the patient and the clinician spoke into the microphone. Yes, the patient was able to hear the clinician a bit better than before, but it didn't help the clinician to hear the patient's response.

Everyone plays a role

There is, as this • article from Parkinson's Disease Foundation • says, “…no one-size-fits-all solution for improving communication in PD. The key is to be flexible, creative, and to shift or combine strategies as needed as the disease progresses and communication needs change. It is also important to remember that everyone involved in the conversation plays a role in its success, and in allowing people with PD to be heard.”

For me it underlines the assumption that no matter how up-to-date the training is (this was a very bright, caring young lady) a clinician’s voice is always deemed more important than that of the patient.

We are all aware of the degree of infantilisation of elderly disabled people inbuilt certainly into British culture – probably a global phenomenon – but it should be strongly resisted in favour of facilitating communication so that traumatised patients don't simply lose heart. Not everyone is known for having been able to “sting like a bee” as Ali famously was (though watch out for the low mutterings of "I aintn't dead yet"). It serves everyone well to remember the strength of character, determination and resourcefulness it takes to live life with as much independence as impairment will allow. Credit must be given to that person for the capacity to take their own decisions. Not until sufficient effort has been made to enable good communication should decisions be made on someone’s behalf. It seems appropriate to include here a link to a pdf format report by an all party parliamentary group (be aware, it comes with a content warning) • “Inquiry Into Access To Communication Support For People With MND” •

So don’t just sit there!

I also have to question the unconscious use of restraint by furniture. It may be deliberately done to keep someone from putting themselves at risk, but even this can be no excuse for leaving a body immobile for five hours at a stretch. Avoid bed sores of course, but ensure it doesn't render him or her incapable of doing the most basic • foot raising exercises • while they have the opportunity.

There is probably a name for the law that states that higher the level of training, the more it displaces rather than augments common sense. Perhaps someone could let me know in a comment?

On these two… hang all The Law and The Profits*

It seems appropriate to show you the Monet:
The Houses of Parliament, sunset

Lent is a time of austerity – self imposed.

For disadvantaged people in the UK it has proved to be a season full of fear, the imposition of austerity and the threat of more of it. This has been felt particularly by people with significant impairments, and principally imposed by those who have a duty of care for us, and the political power, but not the will to carry out that duty.

Part of the difficulty, it seems to me, is that disabled people are seen as 'other', 'different', 'beyond the pale' – even 'special' – leading people, consciously or not, to make them scapegoats, for everything from being a burden on friends and families to a financial millstone round the treasury's neck.  

Impairment is part of life; where society fails to accommodate impairment, justice is not served by blaming the person with the impairment and causing them hardship, financial or otherwise.

Nobody expects sackcloth and ashes from the world of politics, even when forced into a climb down on cuts to disability benefit. It seemed unclear whether this was actually a retraction or just a postponement, though at first there was an attempt to brush the matter aside as merely an error in presentation. Either way, on Maundy Thursday the spirit of metanoia was predictably but disappointingly absent on the government front bench in the House of Commons.





In the House of Lords, this week has seen the launch of a committee report examining the impact of the Equality Act 2010, which brought together reforms over the last 40 years and applies in England, Wales and Scotland. The Disability Discrimination Act 1995 still applies in Northern Ireland but has been updated.

The BBC's coverage reads:
Baroness Deech, who chaired the Lords committee said:

"We have been struck by how disabled people are let down across the whole spectrum of life. […] Access to public buildings remains an unnecessary challenge. Public authorities can easily side-step their legal obligations to disabled people, and recent changes in the courts have led to disabled people finding it harder to fight discrimination."

It continues:
Tom Coleridge was shot and paralysed in Afghanistan six years ago. Now, even going to his local restaurant can prove difficult.

"I only want to take my girlfriend out for dinner," he said. "But it can often be a problem. Sometimes I am told to go round the back and fight my way through bins of rotting food and through the kitchen which feels really embarrassing.
"Some places just say no, sorry mate, you'll have to get out of your wheelchair if you want to come in. How am I supposed to do that?"

There is much talk by people with power and influence of the valuable work done by volunteers and charities to 'encourage', 'help' and 'support' disabled people etcetera, etcetera. Most of these legions of charities and organisations were set up by disabled people themselves or by their families and carers in order to try to compensate for the failings in the way society has come to be organised.

This takes enormous amounts of energy, money and time which could be much better spent. 

Thanks to generations of committed and persistent campaigners, the equality legislation is in place in the UK, and has been for four decades.

Picture it: with the legislation properly implemented and enforced, think of the energy that would be freed up to add imagination, compassion, problem solving, ingenuity and tenacity to a British society that actively welcomed people with impairments as colleagues, employees, customers, teachers, performers and members of parliament!

There is no getting away from it. On these two houses of parliament really do hang all the law and the profits.

*Of course I was deliberately misquoting the New Testament.

"…This is the first and great commandment.

And the second is like unto it, Thou shalt love thy neighbour as thyself.

On these two commandments hang all the law and the prophets."

You may be hearing a voice asking, "And who is my neighbour?"
You'll find the answer in this discussion of the parable of the good Samaritan.

What are you – and your business – planning for Disabled Access Day?

On 12 March Disabled Access Day will be encouraging disabled people in the UK to try something new or go somewhere new. For many disabled people (and their families) that is a very big ask because they simply don't have accurate information on which to plan their visit.

"That's not a problem,"  I hear everyone say (from visitor attractions through to village pubs) "all they have to do is phone us and we'll tell them."

Not so. Personally, I’m hoping to have better luck than last year when four similarly impaired friends and I tried going out for lunch somewhere new on the first Disabled Access Day. We’re reasonably intrepid, but all of us had to cry off as it began to snow. As it turns out the pub wasn’t as accessible as they had led me to believe when I phoned, so though we were prepared to try somewhere new, we saved ourselves a lot of hassle and potential danger. This is where a video and a detailed review, such as those it's possible to create on Euan’s Guide, could have shown us what the prospects were for a good pathway from car to pub door for example, as well as the facilities indoors.

Are you making the most of £12.4 Billion?

Yes, that's right. The accessible tourism market in the UK is worth £12.4 billion a year. But don't take my word for it, watch the video from VisitEngland

• how you can participate as a venue

Of course it’s great if your venue is already listed in the • What's On • section of the Disabled Access Day website. If it's not, you still have time to • register • and get yourselves on the map, and spread the word.

If on the day, despite your best efforts, you’re a venue that finds itself twiddling its thumbs waiting for disabled people to take up your offer, don’t be disheartened! Try something new yourself – take a video showing the accessibility of your venue and send it to • Euan’s Guide • who sponsor Disabled Access Day. They will in turn submit it to showmetheaccess so that your access information will be available for disabled people to refer to for as long as you like - and it will save you valuable time that you’ve spent in the past trying to describe your venue’s access over the phone.

• how you can participate as a group or charity

This is a good opportunity to make contact with new members, set up an outing or a taster session for a new activity for your existing members. • Be part of it! •

• how you can participate as an individual

You’ll find ideas of how to get involved on the • website • and also details of participating venues and events where you'll find a warm • welcome. •

But that's not all…

• as a business 

You have something to offer to disabled people, but it isn't allied to tourism? No problem. Disabled people need access to all kinds of goods and services, just like the rest of the population. If people with impairments can find stuff that meets their needs, they are not so disabled by the world around them. That's what inclusion is all about. 

Because • showmetheaccess • works slightly differently, we have teamed with Euan’s Guide as our contribution for Disabled Access Day. We host many different categories of video link on our site, which Lonely Planet says “is a very interesting project: a library of videos covering every aspect of life from education and sport through digital technology and travel shows how to live with a variety of disabilities. Tip: the Leisure tab is a richer resource for travellers than the Travel tab! Although this is a UK-based site, the video content is not limited to the UK.”

Don't be left behind…

What company doesn't want their share of the business generated by UK households which include a disabled person?

After all, it amounts to £420 million each week.

These days it just doesn't make economic sense to ignore the market associated with (roughly) one fifth of the population. If you need more convincing to take the accessibility market seriously, an article by Swiss company Equalex might give you some • insight. •

In fact, the annual global market is estimated to be more than $8 trillion. That's a market the size of China.

Disparate thoughts from the turn of another year

The season of fall isn’t autumn - it’s winter

In all the falls prevention literature we who are prone to falling (yes there is humour, albeit ironic) are urged to learn from our falling - and our failings. More on the literature another time, but this is what a catastrophic fall taught me.

I knew that I didn't have the appropriate amount of support in place to cope with managing my own degenerative impairment as well as supporting my elderly increasingly frail father, who, as it turned out, has Parkinson’s, and co-supporting my friend, a stroke survivor with multiple impairments. I had been asking for help for the previous three years. What I learn from this is that the authorities take too long to respond when we warn them that we are nearing crisis point, and that they are only looking at post-crisis damage limitation, not even crisis management, let alone preventive measures. Here’s something that might help you or someone you know: • Falling Safely - Judith Sullivan •

Growing up is over rated

Round about my mid 20s my mother said to me, very scathingly, "You'll never grow up." She was a very keen church-goer, and I am afraid I resorted to an underhand ploy. I quoted back to her "unless you become as little children…" and I've tried to stay true to that ever since. In spite of having to make some horribly serious decisions from time to time, and try to be "grown up" and set aside the resentment I feel about a life half lived and increasingly isolated, I aim to retain a childlike enjoyment in things I can do, even if the list grows shorter year by year. Kingdom of heaven it isn't but it's at least workable much of the time. This is to remind us all that children, including disabled children, have the right to play:
•  Children's Right to Play as an Occupation  •

I’m the The King of The Castle

The pantomime season is not quite over, and the media have discovered that fairy stories are older then they had thought. These traditional archetypal tales have helped children to grow up, and to keep people sane and well adjusted through hard times down the millennia.

One of my personal favourites is the Russian tale Vassilisa which I first encountered in "Women who run with the Wolves" by Dr Clarissa Pinkola Estés. It is the story of a girl growing up in a household where the alpha male is too busy making money to pay proper attention to his responsibilities regarding the welfare of the most vulnerable in his charge.

What applies to heads of households surely applies a thousandfold to civic leaders. Pinocchio may not be ‘traditional’, in that we know who wrote it, but it certainly keeps within the pattern. As the Blue Fairy tells him: • “Prove yourself brave, truthful and unselfish, and some day you will be a real boy.” •

See • showmetheaccess • website for video links to practical ideas around impairment

"Vasilisa" by Ivan Yakovlevich Bilibin - skazka.com.ru. Licensed under Public Domain via Commons.

Mr Cameron, I'd like to take the opportunity…

 

I thought, "Did he really say that?"

A few days later I checked on the transcript. Yes, you did, Mr Cameron. Here it is in black and white:

"Opportunity […] doesn’t mean much to a disabled person prevented from doing what they’re good at because of who they are."

Just run that past me again, will you? Okay: "Opportunity […] doesn’t mean much to a disabled person prevented from doing what they’re good at because of who they are."

Here we are, slap bang back in the medical model of disability where the obstacle is perceived as the person with the impairment themselves. Most of us with any connection with the subject have moved into a more rational perception with the social model of disability, with many engaging in interesting discussion beyond it.

No, not because of who we are

Please understand: the lack of opportunity comes about not from who we are, but from the misconceptions about and/or hatred of us, attitudes which are upheld by those responsible for the continued existence of the barriers.

People in positions of power, authority and influence continue to send out mixed messages. We have all kinds of initiatives - far too many to mention - which, I wouldn't mind betting, frequently work only where people with real understanding make decisions and take action probably beyond their pay grade.

What is still lacking is a change in perception and attitude by decision makers. 

Over twenty years ago I was so delighted - and astonished - at the enlightened attitude expressed in the British Gas appointments advert below that it lived on my pin-board for a decade. Sadly it seems to have been a rarity, as it still has the power to surprise, even given the introduction of the Disability Discrimination Act the following year, and the subsequent Equalities Act. When it comes down to it, legislation, however well worded, merely allows the person discriminated against to take out a private prosecution; something for which the majority of people with impairments simply do not have the resources, financial, physical, emotional or psychological.

The enduring part of the advert is:
"Our diversity is our strength […] It's simply good business sense. If you have a disability and a good degree, you're likely to have developed lateral thinking, planning and problem-solving skills long before your contemporaries. What's more, you bring an alternative viewpoint to project and team work. As an organisation committed to quality in its thinking and its workforce, we're prepared to invest a great deal in these skills."

Access to Work* remains one of government's best kept secrets, but has the potential to change not only the lives of individuals, but in the light of the above, to transform industry as a whole - to strengthen its problem-solving capability, to increase flexibility and co-operation, and through genuine inclusion, tapping into the hidden talents of the entire workforce, not just graduates, to be a real driver of creative, economic stability.

It does take leadership though, and retrograde pronouncements don't help. It's an old saying, but true: if you're not part of the solution, you're part of the problem.

They say wisdom comes with age, so I guess your birthday is a good time get on side, Mr Cameron.

From just one of the 19% of the UK population who live with impairments, and who are disabled by the attitudes of some people, and by some of the constructed environment. *Find other useful video links - and add your own - on www.showmetheaccess.co.uk

Now is the time, so seize the day!

The sun may not be shining as much as we'd like, but the principle of making hay still applies - time to take some video to promote your venue, while you have a range of visitors who can show off your premises and services to great advantage.

It doesn't have to be Hollywood production to be really helpful.

This short piece of hand-held video shows well enough what the terrain is like on one of the trails in Thetford Forest

and this one shows the user's perspective getting to the arena at the Download Festival

while panoramic views put together as video work remarkably well for the Braithwaite Fold campsite.

Enlist the help of a wheelchair-using visitor too, or a parent with a pushchair, or someone who uses sticks to help them get around. If they are willing to appear in your video it will enable future visitors to see what the access is like far more immediately than even the most thorough of access audits, which are really more useful for detailed study, especially by your manager.

Spoken feedback from them would be advantageous too. And what a lot of people forget is that even captions on video are not accessible to Braille output devices - though if you know different we'd be delighted to hear. So, for the benefit of some astonishingly intrepid deaf/blind people out there, it's handy to include text of any commentary as well as some brief text description into the 'content' box of our submission form… You'll find some more tips on the help page of our site.

Upload your links to showmetheaccess.co.uk and the news will get tweeted far and wide. Cameras: roll!

Granny’s ginger jar

My grandmother was a very modern woman; stylish in her own way though not a great beauty. She didn’t have a lot of money, but she earned enough to be able to afford the occasional thing that pleased her. Now with the shed-decluttering season under way I’m looking forward to re-finding a ginger jar that has come down to me; not an antique, but she liked it and so do I. When I packed it away last time I moved house the lid got broken. I shall mend it, maybe in the time-honoured way the Japanese do, with gold foil to accentuate the breakage, reminding us that there is beauty in things which have been repaired.
 

Valerie McGlinchey [CC BY-SA 2.0 uk (http://creativecommons.org/licenses/by-sa/2.0/uk/deed.en)], via Wikimedia Commons
 
She was 27 when she got the right to vote. I took her for granted of course, but looking back she was quite a remarkable woman. Her skills in needlework: dressmaking, pattern cutting, tailoring; and leatherwork in partnership with my grandfather; and her confident entrepreneurship made a huge difference to the family's life, particularly since my grandfather returned from the 1914-18 war minus one leg, and died too young, even for the early 1950s.
 
Many of my generation, born in the decade following World War II, grew up in a charmed countryside, or an equivalent magical townscape. Like Adam Young, a central character in “Good Omens” by Terry Pratchett and Neil Gaiman, we could wander where we liked and get into benign mischief our parents knew little about - though I dare say they suspected. Childcare was informal, and part of the social framework: at the age of three or four I was regularly at an elderly neighbour’s house to watch her small prized television while my mother had half an hour to herself. Milk - and orange juice - was still delivered by time-honoured horse and cart but babies were delivered by the still new NHS.
 
Growing up we were not unduly restricted but allowed to be children with the risks and responsibilities appropriate to our age and development. I’m certain that part of this was down to our parents’ refusal to allow the fear and uncertainty that had threatened their own wartime youth to dominate the rest of their lives. It formed a good pattern for us to follow.
 
The school teachers I had taught us not just to read and write but also to think, to question and to explore the world for ourselves. This reflects their freedom to teach in line with their enthusiasm, moral code and wisdom gained through life experience rather than by some hidebound bureaucratic formula. Public libraries were enchanted treasure-houses that rewarded the explorer with priceless riches - all free. Grants to cover tuition fees and living costs were mandatory in those golden years for students fortunate enough to gain access to further education. This was all of a piece with our prospects for work, which held out the opportunity to contribute to society. Luckily by the time we were told there was no such thing we had already proved to ourselves that there could be if only we believed in it.
 
Of the contemporary friends I’m still in touch with most seem to be growing old pretty self reliant and resilient on the whole. This is saying quite a lot since a number of my friendships have been formed among disabled people, particularly as my own ‘progressive’ impairment, inherited through that same grandfather, has left me more isolated, at the mercy of inaccessible ‘mainstream’ society.
 
We fear that the NHS that helped us with as little trauma as possible into the world will see us out of it in very different fashion, and before we’ve been as much use as we can be. We fear for the children, too many of whom we see deprived of the freedoms and emotional security which formed our characters. And we fear for their older siblings and their parents who seem bowed down with debt which can never be paid off, and economically stifled by zero hours contracts or part time jobs at breadline wages.
 
Among the disabled bunch I detect a familiar but understandable reluctance to acknowledge fear; I know it’s there, as despite government protestations we are too well acquainted with discrimination and lack of joined up services to be anything better than deeply uncertain about our future care. Every now and then I hear my grandmother’s voice telling me “worse things happen at sea.”  

Her store of wise old saws comes in handy; there was one for just about any occasion. An observation that the food was too hot was greeted with “it’s come from a hot place” and if it was noticed that someone’s legs were particularly long, “yes, they go all the way up to his b-t-m.”
 
We’ve had yet another go at putting a cross on another piece of paper to try to influence our future, and there’s a widespread sense that many things that ordinary people depend on are now broken. To any political types who might happen to read this I’d like to pass on another of my grandmother’s sayings. In my family the sound of alarmingly loud clattering of crockery would elicit the cry, "Save the pieces, we like the pattern!"
 

See showmetheaccess website for video links to practical ideas around impairment