Why Meeting your Friends for an Ice Cream Matters by Geoff Adams-Spink


I’ve spent the last goodness knows how many years trying to persuade colleagues and clients that the traditional way of looking at disability - something that we call ‘the medical model’ - is, and always has been, immensely unhelpful.  The medical model sees disabled people as a series of problems waiting to be fixed.  Those that can’t be fixed will require ongoing medical therapies and equipment to help ‘overcome’ the disability, impairment or condition.

Not surprisingly, this is not a construct embraced by the majority of disabled people themselves.  Those of us who live with impairments and long term health conditions rather prefer the ‘social model’ of disability; this concentrates on removing the barriers in society that inhibit equality and full participation.

Thus, for example, a building with stairs and no lifts or ramps is pretty much off limits to a wheelchair user.  While the medical model would probably prescribe a stair climbing wheelchair, the social model would suggest step-free access, and while we are at it, some automatic doors.

Joseph Coughlin - Director, MIT AgeLab

Joseph Coughlin - Director, MIT AgeLab

I have always been interested in the intersection between disability and older age.  As I age myself, this is becoming more and more pertinent.  Imagine my delight, then, when I discovered that the MIT AgeLab had been thinking deep thoughts in this area as well.  MIT’s Joseph Coughlin has published a book entitled The Longevity Economy.  In this, he chides businesses for marketing products at the senior market that older people don’t actually want.  Why?  Because many of us are stuck in an outdated narrative of old age which views people over 65 as a series of medical problems waiting to be fixed - in other words, the medical model is alive and kicking for older people as well as those of us with disabilities.

There is, though, another way: a retirement world full of people who are not only consumers but also producers; IT savvy baby boomers who don’t want emergency assistance pendants hanging from their necks, but would rather summon assistance using smart-home speakers, smartphones and even smart watches.  This is a world in which businesses that want to survive must recognise that appealing only to the base level of Maslow’s Hierarchy of Needs just won’t wash.  Coughlin says that too many businesses concentrate on devices and services whose sole aim is to keep somebody alive rather than appealing to what might actually surprise and delight them: what, he says, is the point of life if you can’t spontaneously go and meet a couple of friends for an ice cream?

Businesses that fail to recognise that the number of older consumers is going to increase massively over the next 30 years, and who fail to acknowledge that baby boomers will not be fobbed off with ‘beige plastic doodads’, are not destined to be long for this world.  Baby boomers themselves will have a hand in creating products and services that suit them - something they have always done since achieving adulthood.  

If you want a really good example of a spectacular product flop - when a business thought it had identified a problem and created a solution - look no further than the Heinz Corporation: in the 1950s, they attempted to market a range of ‘pre chewed’ food to seniors.  They figured that this market would be far bigger than the baby food market: after all, infants had an annoying habit of growing up and eating ordinary food quite quickly; get an older consumer to buy a can of mushed up beef stew in their 60s and you could have a ready market for another 20 or 25 years.  What could possibly go wrong?  The bright young things who conceived this probably tasteless pap forgot to ask older people if that was what they really wanted.  Worse, they didn’t for a second contemplate the stigma involved in arriving at the supermarket checkout with a trolley full of products that basically announced the fact that the person’s teeth no longer worked very well.

The Villages - some people’s notion of ideal retirement

The Villages - some people’s notion of ideal retirement

Coughlin also has little time for the new paradigm of retirement that was created to give the newly wealthy, newly retired some sort of purpose and that can be summed up in the phrase ‘the golden years’.  Age-segregated retirement communities based around a golf course in Florida are more dystopic than utopic: it does not do to corral older people into ghettos, removing them from society and encouraging younger people in the view that this is what older people really want.  

In order to point the way, Coughlin contrasts the marketing of eyewear with that of ‘earwear’: where, he asks, are the Pradas and Armanis of the hearing aid world?  Maybe, we are experiencing the first green shoots of this phenomenon with Apple’s AirPods and the recently announced Amazon Echo equivalent?  What if, in addition to streaming your music and audiobooks, your new, designer ear buds were able to amplify the sound of your interlocutor and, simultaneously, filter out extraneous background sound in a noisy restaurant?

I spent a good deal of time trying - usually failing - to persuade my elderly mum to wear a pendant around her neck in case she fell and couldn’t get up to summon assistance.  Why was she being so stubborn?  Couldn’t she understand that this device would bring her much needed help and me much needed reassurance?  What my mum wouldn’t articulate - and what I totally failed to see - is explained by Coughlin: the pendant, the vital lifeline, reinforces an older person’s sense of mortality.  It is not a product to which anyone would aspire.  Smartphones and smart watches, on the other hand, are aspirational products that appeal across the age range.  Because the user is much more likely to be wearing a smart watch than an alert pendant - even one disguised as jewellery - they do a much better job of fall detection and summoning emergency assistance.

I discovered for myself the potentially lifesaving properties of smart watches on New Year’s Day this year.  I was in Blue Ridge, GA and the car that I was travelling in was ’T-boned’ by a vehicle coming down the hill at considerable speed and slamming right into the passenger side door.  My Apple Watch detected this as a fall, and because I was in shock, and didn’t have the presence of mind to reassure it that I was okay, it started working its way through my emergency contacts.  The latest, Series 5 Apple Watches are even smart enough to know which country you are in and to dial the emergency assistance number for that particular jurisdiction. 

Smart speakers - more appealing than a lifeline pendant

Smart speakers - more appealing than a lifeline pendant

My home is rapidly becoming smarter and smarter.  I have Amazon Alexa speakers in most rooms which are hooked up to lights, blinds, curtain tracks, central heating and even my tumble dryer.  This is tech that excites and delights and is therefore, according to Coughlin, much more likely to be adopted by tech savvy boomers.  

Meet AGNES - your future, older self

Meet AGNES - your future, older self

While some companies have made great strides in making their products universally accessible, others are stuck in a groove whereby twenty-something men are designing inaccessibility into each and every product that they touch.  AgeLab has done a good deal of work in promoting good and universal design to the likes of Proctor & Gamble, Mercedes Benz and BMW.  While the conventional wisdom among disability equality consultants is to avoid ‘experiential’ training devices (making non disabled people use wheelchairs or don blindfolds), AgeLab has developed an older experience suit (affectionately called AGNES or Age Gain Now Empathy System) to give younger designers an idea of what it is like to have the body of somebody 30 or 40 years their senior.  While this goes some way to reproducing the physical limitations of old age, it can never replicate the musculo-skeletal pain and the sense of isolation and loneliness that all too often accompanies our later years.  

Coughlin would be the first to concede that what businesses really need is the direct, lived experience of middle aged and older people, advising on design.  He particularly highlights the crucial role of older women in driving innovation in the new senior economy.  After all, he says, the gender imbalance in older age is accentuated the higher up the age scale you go.

Older people are more and more staying economically active, remaining either full time or part time members of the workforce.  Again, the traditional paradigm of old age and enforced idleness after age 65 is being broken down.  For some, this is an economic necessity as pension schemes respond to increasing life expectancy by cutting back on pension benefits and/or shifting retirement age upwards.  For others, though, it’s a choice based on a desire to remain connected to a profession or a network of people.  

Products aimed at women have often failed as spectacularly as the Heinz older people’s food: Dell, with it’s series of pink laptops; Bic with its special pens for women; numerous car manufacturers who have designed features into cars that appeal to a man’s idea of what women want.  The only way is for women to be the lead innovators, to show the market what is needed.  

Everything you need - somewhere to stay for the night or several nights

Everything you need - somewhere to stay for the night or several nights

We are also very adept at subverting the use of products to our own ends: using a product for a purpose other than that for which it was originally designed or marketed.  This is what Coughlin calls ‘consumer hacks’: apparently the Kleenex tissue was originally marketed as a make up removal product, not as a disposable handkerchief.  Thus, the ageing boomer generation will subvert services that they like - internet grocery delivery for example - rather than relying on medicalised services like Meals on Wheels.  A fabulous and eccentric example of this is the British couple who, instead of going into a retirement home, sold their house and moved into a Travelodge.  They enjoyed all the services they needed - daily cleaning, bed changing, on-site catering - while holding onto their independence and dignity.  They were eventually given an award for being the company’s longest staying residents; they had clocked up 22 years.

AirBnB is another concept that was originally designed to help younger people with the cost of accommodation.  These days, most of the hosts are over 40.  Similarly, many Uber and Lyfft drivers are over 50 and get great reviews because they know their neighbourhoods really well.  Coughlin cites examples of other services that are rapidly becoming popular with older, IT literate people: Hello Alfred (named after Batman’s butler) is a service available in many US cities whereby people can be booked by the hour and will undertake household chores like ironing and folding laundry.  Instacart is a shopping service used by everybody, but particularly popular with those who find going to the shops a challenge.  Here again, the consumer is in control - it’s a service for everyone not some medicalised ghetto service for ‘the housebound’.  Dial-a-Ride anyone?

Given that most boomers encountered and conquered IT during their working lives, it is reasonable to agree with Coughlin that they are in an ideal position to become what he calls “lead user innovators”.  They will either subvert existing technologies to their own ends or be instrumental in the development of new products and services that will meet an ever increasing need among older consumers.

A place in the sun - one of America’s largest retirement communities

A place in the sun - one of America’s largest retirement communities

A contrast is drawn between The Villages - a vast age-segregated, golf orientated retirement community in Florida -  and another type of village, an informal network in which retired and semi-retired older citizens provide support for each other.  People are able to meet, share leisure facilities and, crucially, interact with other generations in the community.  Moreover, people are remaining in the communities in which they worked and lived, often surrounded by networks of friends and family.  The Village-to-Village Network is spreading across North America and to the UK, Singapore and Japan.  It may not offer the same coherence as age-segregated retirement facilities but it represents a more organic way of living and it is helping to promote more positive attitudes to old age.

Joseph Coughlin says that the new narrative of old age is still being written.  It is frontier territory in which there are few certainties and in which many endeavours may well fail.  What he does predict is that products in this new and untested market will have to be fun and aspirational: they will have to make later life more enjoyable, not just liveable.  The boomers, after all, are the generation that wanted to have it all: in their later life they will continue to demand travel, sex, and even work.  Coughlin concludes by saying that, although there are few signs or markers as to what constitutes success in this new later life, politics at least demonstrates that an older brain and an older body are no bar to the highest office: in 2016, Hillary Clinton was 69 while Donald Trump had already achieved his three score years and ten.  

Industry, Coughlin says, needs to change its ways to catch up with the prevailing reality, to halt the haemorrhaging of older, more experienced employees.  There are some glimmers of hope on the horizon: the German automotive industry, for example, has recognised that older workers are a valuable resource.  BMW has made a concerted effort to adapt the working environment so that it is more appealing to older workers. What they have seen is increased productivity and a lower drop out rate.


Younger people have always been sold a vision of older people which is distinctly unappealing: why, asks Coughlin, should they bother to save more of their current income just so that they can pay their nursing home fees?  The new narrative of older age will see those young people’s parents and grandparents working and volunteering.  They will continue to be valued and respected members of their communities. They may even retrain and acquire new qualifications.  Later life will appear much more than the whittled down version of middle age that it currently is.

Older people have always concerned themselves with their legacy: what they will leave behind for future generations; how they will be remembered. So, perhaps it will be the legacy of the boomer generation that they will have been the ones who ripped up the rule book and created a whole new vision. 

Great British Ideas We Should Share with the World by Geoff Adams-Spink

Designed for few, used by many.

Designed for few, used by many.

I was speaking at a conference in Poland recently and found, to my immense irritation, that the disabled loo was permanently locked.  This meant that I had to locate the cloakroom attendant, wait in line behind medical school students who were handing in or retrieving their outdoor clothing, and then ask to use the loo

I haven’t encountered this demeaning situation since I was at school and - as I was the conference’s opening speaker - wasn’t prepared to put up with this indignity in my fifties.  Come to think of it it’s an indignity that no disabled person should have to put up with, speaker or not.

Of course, I made a massive fuss, the conference organisers apologised to me and the accessible lavatory was left unlocked for the duration of the three day event.  But I have a sneaking suspicion that the status quo ante has been restored - meaning that any student or member of staff at the University of Poznan Medical School would have to request the key from the rather frosty young woman who looks after the coats.  I nicknamed her ‘Smiler’.

This set me thinking - there has to be a better way.  I have every sympathy with those responsible for ensuring the smooth running of the building: as those of us who need to use accessible toilets are all too aware, they are all too often commandeered by people who fancy a crafty fag, to indulge in various types of drug abuse or by amorous couples who can’t contain their lust until they get home.  

Large but perfectly formed.

Large but perfectly formed.

Thankfully, the better way to which I referred was pioneered by a British charity, RADAR which is now part of Disability Rights UK.  The National Key Scheme is a godsend to those of us who need to use accessible toilets without having to wait for non-disabled members of the public to vacate them.  It involves an extra large key - I refer to mine as ‘the big key’ - which will open any one of around 10,000 facilities all over the UK.

Disabled people simply have to send a modest sum to DRUK (I think the last one I bought cost £3 but they are now £4.50 for UK customers) in return for which a big key and a hardcopy directory containing the locations of all of the loos is sent by return.

You will have spotted the limitation of the scheme already: it only covers the UK.  Surely, such a brilliant idea needs to be shared with our EU partners?  If you could get the key adopted in the EU and EEA, North America and Australasia might soon follow and the rest of the world would cotton on eventually.

The other drawback of the big key is that you need reasonably strong hands and wrists in order to make the lock mechanism function.  In these days of key card entry and even smartphones that can open hotel rooms, maybe it is time to develop a fob and/or app that can simply be swiped against the lock in order to gain entry.

It’s time that disabled people’s organisations like DRUK shared their expertise with disability groups in other countries.  Why, after all, reinvent the wheel when there is a perfectly good one across your next international border? 

So I’d like to make a proposal - one for which disabled people in many nations would be relieved to see happen.  

Firstly, DRUK should find four or five partner DPOs in other EU member states prepared to form a consortium to apply for EU funds.  The buy-in of the European Disability Forum would also be essential.  Then, the consortium would need one or two tech partners - big companies like Siemens, O2 or Vodafone.

The NKS could have a hi-tech future.

The NKS could have a hi-tech future.

The tech partners would develop a simple fob and an app that would lead you to your nearest accessible facility.  Once the pilot was proved successful, the consortium would then roll out the Universal Key Scheme - UKS for short - to a grateful 80 million disabled people in the EU.

In return for a modest subscription, disabled people would have a fob and access to the application.  The app would almost finance itself by carrying advertising, as would the fobs which could carry advertising on one or both sides.

Just like hotel key cards, the fob or app would cease to function once the subscription had expired.

No system is completely watertight: people would obtain fobs and/or access to the application simply because they wanted to use accessible facilities for their own nefarious purposes.  The thing is, the existing keys are prone to exactly the same abuse - they apparently change hands online for as little as £2.50.  

What I am proposing would bring dignity and independence to millions of disabled people, would save on maintenance costs because the facilities would only be used by those for whom they are intended, and the EU could show to the rest of the world that it has a social dimension that is often lacking in other societies.

So what are we waiting for?

Canada's Eternal Shame by Geoff Adams-Spink

FAO Gordon Campbell - Canadian High Commissioner to the UK

Mr Campbell,

I write concerning the continuing neglect by your government of a small but extremely important group of people.

The thalidomide drug was distributed in Canada (but not in the US thanks to the diligence of one of your compatriots, Frances Kelsey) until March 1962 - four months after it was withdrawn from sale in the UK and Germany.  

You will no doubt be aware that thalidomide survivors in the UK - of whom I am one - enjoy substantial financial support both from the successor company to Distillers Biochemicals Ltd (Diageo plc) as well as the UK government which has just renewed a support package for the next ten years.  

Equally, those damaged by thalidomide that was supplied by the original developer, Grünenthal, now enjoy considerable financial support in order to meet their increasing needs, from the Conterganstiftung.  

Contrast this with the almost total neglect of the 97 thalidomide survivors in Canada.  This is shameful and needs to be remedied without further delay.  If you need proof of the results of this abandonment of your government’s responsibilities, I would suggest that you spend ten minutes of your precious time to look at a film produced by TVAC, the organisation that represents thalidomide survivors in Canada: 

You will see that people are struggling with daily life and are lacking the essentials that they need in order to live with dignity and independence.  Several of the contributors detail cases of systematic sexual abuse.  

If your government wants to delay the process of providing much needed support by trying to establish to what extent there is a shortfall, I am happy to inform you that studies commissioned by the UK Thalidomide Trust and another published by the University of Heidelberg’s Institute of Gerontology will already supply you with an ample evidence base.  

Please pass on the concerns of the worldwide thalidomide community - many of whose organisations are members of the umbrella body that I chair - to representatives of your government who are in a position to turn this sorry situation into something more positive and which more closely matches the aspirations of Canada to be a developed and civilised nation.  

I look forward to your prompt response.  

Geoff Adams-Spink

UK thalidomide survivor and Chairman of the European Dysmelia Reference Information Centre (EDRIC)

Exit the Alchemist by Geoff Adams-Spink

A tribute to the work of Dr Martin W. Johnson B.D. PhD

Martin Johnson

Martin Johnson

The man who, until recently, was Director of the Thalidomide Trust retired from the job after 13 years.  Since I operate by the maxim that it's pointless to become involved in anything unless one is able to make a difference, I feel compelled to set down some of Dr Martin Johnson's achievements because he has most definitely made a profound and positive impact upon the lives of thalidomide survivors, both in the UK and beyond.

My first contact with Martin was by email: that, in itself, would normally be unremarkable had it not been for the fact that the Thalidomide Trust had hitherto been undigitised.  I was in-country Project Director in Rwanda for the BBC and Thomson Foundation and Martin immediately expressed interest in my work and said that we should catch up properly on one of my return visits to the UK.  

Until his arrival, the management culture at the Thalidomide Trust could euphemistically be described as 'comfortable' or 'cosy'.  It was established to distribute monies from Distillers and the Government to people born with impairments caused by the morning sickness drug, thalidomide following the 1973 settlement.  Its first Director was a former RAF Group Captain and this seemed to set something of a pattern for the management of the organisation - Group Captain Gardener was assisted by Group Captain White and they in turn handed over to Neil Buckland, who shared neither their RAF pedigree nor their zeal for innovation.  

In its first few years, the Trust engaged a team of social workers, organised ambitious group holidays for the then hormonal, teenage thalidomiders, opened a holiday hotel on Jersey and pioneered vehicle adaptations, so that every thalidomider who was capable of learning to drive would have their own vehicle and consequent independence.  

One of the first adapted Minis which is now in the  Science Museum

One of the first adapted Minis which is now in the Science Museum

However, these early years gave way to a period of stagnation - both intellectual and financial.  Thalidomiders were settling down, marrying and buying their first homes.  The social work team was dispensed with and the vehicle adaptations became a matter of routine upgrading and renewal.  Haigh Moor - the Jersey holiday hotel - was underused, closed down and sold off.  Though there was work to be done, the management at St Neots (where the Thalidomide Trust is headquartered) seemed more content to run a Rolls Royce cheque-writing service.  

When I discovered that Dr Johnson was maintaining the honourable tradition of former RAF officers finding useful things to do, my immediate reaction was to assume that here was another example of the old boy network ready to don the tweed jacket and carpet slippers on the gentle descent into retirement.  In short, somebody who would never rock the boat.  

I should have learnt by now not to trust my assumptions: in his 13 years at the Trust, Martin has transformed our quality of life, our financial security - even, perhaps, our sense of who we are.  

It should be stated from the outset that Martin may have been answerable to this or that line manager throughout his life, but he always served a higher purpose: "He only has one line manager and that's God," I once remarked to a fellow thalidomider.  

Martin was and remains convinced that thalidomiders - those of us lucky enough to have survived and the tens of thousands who didn't - are the victims of a monumental injustice.  As the director of a national charity - governed by a board of trustees that was then ultra cautious - his room for manoeuvre was heavily constrained.  

Being the lateral thinker that he is, Martin set about assembling a team of thalidomiders that would front a campaign to improve the support that every thalidomider would eventually receive.  Like an alchemist, he carefully combined the ingredients that would result in an extremely powerful compound.  

He quickly identified Nick Dobrik as a maverick campaigner - someone whose grasp of economics and finance matched or surpassed that of the trustees; someone to whom politicians and senior corporate executives could speak on an equal basis.  

Martin urged me to team up with Nick whose first utterance shocked me to the core: "Our Trust is going to run out of money," he told me.  Setting aside my objections that our finance trustees would surely have been aware that there was a black hole in our finances, Nick patiently explained, by taking me through the figures, that the Trust fund was not sustainable for the lifetime of its beneficiaries.  

Gordon Brown - u-turn on thalidomide

Gordon Brown - u-turn on thalidomide

He dared to think the unthinkable and say the unsayable.  His first campaign was to persuade the then Iron Chancellor, Gordon Brown, that distributions from the Trust should not be subject to tax.  He felt that it was morally abhorrent that compensation money for injury or disability should partly trickle back to the Treasury.  

Of course, Nick couldn't do the campaign by himself and he was paired with Guy Tweedy - a bluff Yorkshireman with a talent for knocking down doors.  

Having succeeded in getting the government to do a u-turn on the taxation issue, the next target was Diageo plc, the successor company to Distillers which had manufactured and distributed thalidomide in the UK and Commonwealth.  After protracted negotiations, the company agreed to enhance its contribution to the Trust by more than £150m.  In subsequent years, there would be further enhancements.  

It was during the Diageo negotiations that Martin's strength as a moral as well as a strategic thinker came to the fore: Diageo had played with a slightly less than straight bat and had managed to produce a set of figures that Nick knew to be incorrect - "like comparing apples with pears" was how he described them.  

At the time, Martin was in South Africa but was soon brought up to speed.  He sent the Diageo Board a devastating fax that must have made them collectively think they'd had their collars felt by the Almighty.  Without much further ado, the figures were hastily revised.  

The company remains resolutely unrepentant 

The company remains resolutely unrepentant 

Having settled with Diageo, there was an ultimately unproductive spell trying to bring the German developers of thalidomide, Grünenthal, to book.  The company never acknowledged its wrongdoing and certainly negotiated in bad faith.  Throughout these negotiations, however, Martin painstakingly pointed out exactly how many people had been damaged by the company's negligence.  Whether they liked it or not, he shamed them into silence but ultimately withdrawal from the negotiating table. 

The next target was the British Government: it, after all, had accepted Grünenthal's assurances that the thalidomide drug was totally safe.  It had not done due diligence in the way that Frances Kelsey at the American FDA had.  

A carefully orchestrated campaign involving all of the Trust's beneficiaries was put together with Nick at the helm but with Martin providing the intellectual and evidential gravitas.  Once a critical mass of MPs had agreed to assist the thalidomiders, negotiations were opened with the Department of Health.  

Martin was pivotal in persuading the civil servants and Health Minister, Mike O'Brien, that a grant paid to the Thalidomide Trust could be distributed to beneficiaries using the Trust's existing and extremely sophisticated points system.  This is an elaborate measure of comparative degrees of disability.  Martin insisted that allowing beneficiaries unfettered access to their health grants would result in better outcomes than would have been the case if we had all had to apply for sums of money on a case-by-case basis, submitting evidence as to how and why proposed expenditure would constitute relief of disability or improved health.  

Prior to the 2004 tax change, every piece of Trust expenditure by beneficiaries had to be justified if it was to be exempted from tax.  This was a system loathed by beneficiaries and burdensome to the Trust's staff.  Martin was adamant that reintroducing such a system would be wasteful, negative and counter-productive.  Such was the force of his argument - backed by trustees and some of the sophisticated systems in operation at St Neots - that his arguments won the day.  

The health grant was a three-year pilot, so the pressure was on to get it renewed - no mean feat set against a climate of austerity.  Martin set about creating independent monitoring and evaluation that would convince politicians and civil servants that the money was being applied for the provision of much needed lifestyle improvements - adapted kitchens, ergonomic vehicles and so on.  

The health grant funded my fully accessible kitchen

The health grant funded my fully accessible kitchen

Because of his attention to detail, thoroughness and intellectual rigour - not to mention a brilliantly orchestrated Westminster campaign by Nick and the rest of the team - the government announced in 2013 that the health grant would be renewed, this time for ten years!  This provided much needed financial certainty for beneficiaries whose bodies were wearing out, who were contemplating retirement or semi-retirement and who needed to rethink their lifestyle.  

Martin always maintained that the Trust had three potential resource pools on which it could draw: its trustees, its staff and its beneficiaries.  His analysis was that, at the time of his arrival at St Neots, the beneficiaries were an almost untapped resource.  

The legal document that established the Thalidomide Trust - the 'deed of trust' as it is known - provided for a 'National Advisory Council' which had originally consisted of parents of beneficiaries.  Its role was and remains to advise the trustees.  I served on the NAC for more than two decades during the fallow years of the 80s and 90s.  It was little more than a talking shop and the trustees could ignore its recommendations or not as they saw fit.  

Under Martin's stewardship, the NAC was transformed from lapdog to guard dog in very short order.  I became the first elected chairman of the NAC and I worked with Martin to, as he put it, "put the lunatics in charge of the asylum".  Holding an NAC seat became something meaningful, and not just because of the campaigns.  We were now elected by the beneficiary community and were held accountable for our actions.  We improved communications, set up sub-committees, gained observer status at trustees’ meetings and instigated a National Advisory Council Annual Congress (NACAC) - a yearly gathering of the UK thalidomide clan.  

Martin was also keen to tap into the lived experience of beneficiaries to provide peer support and advocacy for those of us who got into difficulty.  He set up a volunteer visitor network in order to pair beneficiaries with someone who would listen to their concerns, make recommendations and feed back to St Neots when it was deemed appropriate.  He ensured that the volunteer visitors worked to the highest ethical standards, respected confidentiality and learned from each other.  Each summer, the whole volunteer visitor team meets for three or four days to discuss progress and influence the Trust's policies and services.  

From the very beginning, Martin made it his mission to visit all of the Trust's beneficiaries - a total of almost 500 people.  Not only are we scattered throughout the UK, but some of us live as far afield as Australia, Thailand and the Philippines.  The latter was where one William Burton languished in jail, having been convicted of drugs trafficking.  

Billy Burton spent almost 20 years in jail

Billy Burton spent almost 20 years in jail

Following a visit to the Philippines by Martin, Guy Tweedy almost single-handedly launched a campaign to get Billy out of prison.  By then, he had been locked up with rapists, gang leaders and murderers for the best part of 20 years.  Having originally been sentenced to eight years, Billy saw his sentence increased to 20, then 30 and finally 40 years.  Thanks to Guy and Martin, the British Embassy in Manila, the Foreign Office and the government of the Philippines were relentlessly lobbied until Billy received a presidential pardon and came home in 2012.  

Martin's work with the Trust also had its repercussions for thalidomiders in other countries: our settlement was used as a benchmark for revising the support arrangements for thalidomiders who are compensated by the Conterganstiftung (mostly in Germany) and AstraZeneca in the Scandinavian countries.  

He also conceived of an international network - not just of thalidomide survivors - but of all of those affected by congenital limb difference.  Together with the Swedish FfdN, the Thalidomide Trust founded the European Dysmelia Reference Information Centre (EDRIC) which was registered as a non-profit organisation in Sweden in 2008.  Martin's vision was that the incredible problem solving skills demonstrated by thalidomiders would be captured for the benefit of future generations of people born with limb disabilities.  I'm proud to be the current Chairman of EDRIC - an organisation with 27 member organisations in 19 countries.  What's more, I have managed to retain Martin as an adviser to the board.  

EDRIC's first members meeting in Malmö, Sweden - September 2012

EDRIC's first members meeting in Malmö, Sweden - September 2012

Martin continues to worry away at the injustice issue: together with Professor Ray Stokes of Glasgow University and a brilliant German researcher called Tobias Arndt, Martin is writing a definitive history of the thalidomide drug and its effects.  It promises to be as devastating as it is intellectually and historically rigorous.  I dearly hope that the board of Grünenthal will each receive signed copies.  

In spite of his divine connections, Martin, of course, has his faults.  One might almost suggest that chief among them is that he is reluctant to acknowledge that he has any!  However, he is a wonderful ally and, I'm sure, a formidable adversary.  Compared with their position when he took up the directorship of the Trust, beneficiaries are something like four times better off - and that is in real terms.  

So, if we look back on Martin's tenure, and ask ourselves whether he has made a difference, the answer is blindingly obvious.  His successor has a new set of challenges, a fresh pair of eyes and will no doubt execute her functions in a very different way.  Martin, though, is one act that I wouldn't like to have to follow. 

For Disabled Travellers, Every Day is a Tube Strike Day by Geoff Adams-Spink

Although London's busses and taxis are almost all accessible to disabled people, the Tube still has a way to go.  Not good enough, says Conrad Tokarczyk who is running a campaign to get this changed and who has written this guest post for my blog.  

Tube strikes bring misery for London commuters

Tube strikes bring misery for London commuters

Every time there is a Tube strike in London, the city is plunged into complete and utter chaos. Tube passengers are forced to drive to work and jam up London's roads, causing gridlock.  There is a significant price to be paid for businesses, whose productivity slumps dramatically.

Put simply, the city ceases to function properly.

Now, imagine a scenario where every day is a Tube strike - scary stuff eh?  Well, that's what it's like for many disabled people who - like me - cannot rely on the Tube to transport us to work, college, or medical appointments.  I've had to turn down jobs because I couldn't get there using public transport and driving wasn't an option.  I'm sure many people reading this will have had similar experiences.

Only Around a Third of Stations are Step-Free

Currently only 25% of underground stations are fully accessible.  Politicians often cite a lack of money as the reason that more stations are not step-free.  Whilst there can be no doubt that creating an entirely step-free Underground would cost considerable sums of money, this does not mean we shouldn't do all we can to ensure that everybody can use public transport.  After all, public transport - by definition - suggests that it is a service for everybody.

Politicians Must Do More

I would like to see politicians working together, trying to come up with exciting and innovative ideas to generate funds to pay for step-free access.  Simply stating that there is a lack of funding to pay for access is lazy and is no justification for treating disabled people as second class citizens. 

Thousands of disabled Londoners and visitors are excluded from parts of our capital

Thousands of disabled Londoners and visitors are excluded from parts of our capital

One idea I've put to London Mayor, Boris Johnson, is the idea of creating a 'public fund' to pay for access.

The public fund would enable local residents, businesses and councils to raise money for step-free access at local stations.  The idea has gained the support of three Hillingdon MPs.  Recently, Hillingdon Councillors voted in favour of supporting my campaign.

We Can't Wait Any Longer

John McDonnell Labour MP for Hayes & Harlington, sat on one of the very first commissions which looked at the issue of access to public transport in the early 1980s.  He said, at the time, MPs felt they had developed a programme that would deliver a fully accessible transport network within ten years.  

Fast forward 30 years, and we are still nowhere near achieving that goal.  I fear that unless politicians take decisive action to solve this issue, a younger generation of disabled people face being marginalised, and denied the same opportunities as their non-disabled peers.

We must also remember that Britain has an ageing population.  Many older people experience mobility difficulties and have problems managing stairs.  A step-free Tube, would enable older people to retain their freedom and independence. 

If, like me, you are fed up with being denied the same opportunities as non-disabled people, please consider supporting my campaign, calling on the Government to set up a public fund to help pay for step-free access at all tube stations within five years.

Please sign my petition and share it with your networks.     

Staying Focussed - the Story of Elizabeth Wright’s Extraordinary Journey from Childhood to Paralympic Glory by Geoff Adams-Spink

"Ditch the Arm, Keep the Leg", published by OodleBooks

"Ditch the Arm, Keep the Leg", published by OodleBooks

If ever there was a book full of hope, Elizabeth Wright’s “Ditch the Arm, Keep the Leg” is it.  

“Do you ever experience moments of pure elation at being alive?  Feeling the ‘thump, thump, thump’ of your heart and the sheer energy coursing through your body and mind?  This is how I feel every day of my life.”

Elizabeth was born in a suburb of Sydney, New South Wales, with congenital limb difference in an arm and a leg.  She had the good fortune to be born into a loving family that picked her up when she fell but which brought her up with the expectation that she could achieve anything if she tried hard enough.  

Many of us born with a limb difference confront the thorny issue of prosthetics: some were forced by the medical profession into wholly inappropriate body modifications and cumbersome prosthetic limbs.  

In Elizabeth’s case, the lower limb prosthesis was, and is, wonderfully successful - not so its upper limb equivalent, which hung uselessly at her side and was quickly abandoned: 

“After a few days, I refused to put it back on.  It ended up in my wardrobe for a few years, like a discarded piece of offensive clothing, until it was dumped in the bin.  My friends accepted me without it.  I accepted myself without it.  It was a completely useless appendage, unlike my leg.”

She took to swimming like the proverbial duck to water - grateful to her brother, Phillip, for literally throwing her into the family pool at the deep end when she was still very young.  

Her natural aquatic abilities were encouraged and - when in 1993 the IOC announced that Sydney would host the 2000 Olympics and Paralympics - she made up her mind that she would represent Australia.  She was slightly taken aback by her parents’ somewhat lukewarm response to her dream:

“I stood aghast at the doubt my parents displayed.  My parents, who had raised me to believe that I could do anything, were questioning my aspirations.  They’d told me I could walk, play, go to school, swim, write, draw, and dream.  Inside, my heart beat with indignation; I turned to my parents and repeated my claim: ‘I AM going to swim at those Games!’”

Undeterred by parental attempts to manage her expectations - in all likelihood a desire to protect her from disappointment - Elizabeth started to swim competitively and received professional coaching.  

Though her schoolwork sometimes had to take a back seat, Elizabeth’s dream of Paralympic success began to take place as she ploughed up and down the pool: 

“My pool ceased to be a slightly grubby, dark lagoon and instead became a bright, glittering, clean, polished Olympic Pool at Homebush in Sydney.  Every dive, every stroke, and every kick was propelling me towards my dream; I could see all the techniques coming together in my mind, creating the right conditions for the desired result.”

Aged only 16, Elizabeth was selected as a member of Australia’s Paralympic squad for the 1996 Atlanta games, a trip that could easily have been wrecked by a throat infection.  She came away with a bronze medal and an even firmer resolve that Sydney in 2000 was within her grasp.  


Unlike many of her peers, she resisted the temptation to experiment with drugs and alcohol.  Of course, there were setbacks along the way and lessons to be learnt: like many high achievers, Elizabeth was able to deal philosophically with disappointment, adjust her course and maintain her focus on the far horizon.  

As well as being a fantastically useful motivational tool, this book offers a fascinating backstage pass into the razzmatazz of Olympic ceremonies, the realities of life on the road and in athletes’ villages.  

Elizabeth decided - even before the Sydney games - that she would retire from her sport as soon as the Paralympics were over.  

After obtaining a first class degree in Australia, she moved to the UK and now works as a motivational speaker.  

This book rightly focusses upon the slow but steady build up to achieving her childhood ambition of representing her country in the 2000 Paralympics.  The years that follow the Sydney games are skimmed over.  Perhaps the author is already preparing a sequel?  

“Ditch the Arm, Keep the Leg” will inspire every child who has a dream; it will reassure the parents of children born with any kind of difference that there is hope; it will prove to all of us that self belief, determination and focus are the cornerstones to success.  

"Ditch the Arm, Keep the Leg" can be purchased from OodleBooks.  

To find out more about Elizabeth Wright, visit her website or contact her via email.   

Reaching for the Skies - Part II by Geoff Adams-Spink


Following my disastrous Christmas trip to Poland at the end of last year, a good deal of discussion took place between me, British Airways, Heathrow Airport Limited (HAL) and the contracted provider of assistance, Omniserv.  

Together with my fellow BDF associate, Simon Minty, I insisted upon a meeting at which all three parties (airline, airport operator and service provider) were present.  In the event, BA didn’t send a representative but more than made up for it by arranging a separate meeting with one of their young, rising stars.  

She and I agreed that - contractual and legal complexities aside - when you buy a BA ticket, you deserve to have a BA experience which includes the way you are treated at the airport.  

“Heathrow is just so enormous and there are too many people who ask for assistance when they don’t really need it,” complained HAL and Omniserv.  

Nonetheless, we were invited to sit in on a training session - but it was subsequently decided that the presence of a couple of disabled people would be too disruptive for Omniserv agents undergoing their initial training.  The content was shown to us in a private meeting instead. 

As Simon was unable to accompany me that day, I asked Christiane Link - a German-born journalist, frequent traveller and wheelchair user.  Among her many clients is the German national carrier, Lufthansa.  

Technically, the content of the training was up to scratch.  But Christiane and I both identified an underlying philosophical problem which goes to the heart of why passengers travelling through the UK’s largest and busiest airport don’t get the service that they should.  

The independent living movement and disability rights advocates on both sides of the Atlantic developed a new framework for looking at disability in the 1970s.  It became known as the social model of disability.  It contends that people are not disabled by their impairments but by the interaction of their impairments with barriers in society.  

The social model explained

These barriers can be social, economic and (as is so often the case) attitudinal.  Equality will only be achieved once the barriers or obstacles - that disabled people encounter on a daily basis - are removed.  

It’s one thing to provide a step-free environment (which is usually the case in airports in the developed world) but quite another thing to ensure that staff regard people with disabilities as passengers whose rights need to be upheld and whose access to air travel needs to be facilitated.  

“Your training just isn’t social model,” said Christiane.  “If you get that right, everything will flow from there, trust me.”  

She was right: without needing to communicate, we had both reached the same conclusion independently.  

Omniserv’s training manager has a world of experience around disability but much of this comes from the healthcare sector.  

“I tell my staff to treat disabled passengers as if they were their favourite uncle or grandparent - that they need looking after as they come through the airport,” he told us.  

Here is the problem in a nutshell: Omniserv are taking staff - many of whom come from cultures where disability is regarded almost as taboo - and training them to consider passengers with disabilities as people who need care and condescension, rather than active and engaged citizens going about their business.  

Our feedback was duly noted and, we were assured, the social model would be included in the next version of Omniserv agents’ training.  

Of course, the acid test of whether things had improved since Christmas would be to do the same journey again.  Fortunately, I was due to fly from London to Warsaw and back again in early-mid July.  

BA’s new booking system now meant that I was able to request my assistance online rather than dealing with someone in a call centre several thousand miles away.  Unfortunately, although I requested assistance as someone with impaired vision, I got a chirpy, automated email response telling me that my wheelchair had been booked!  

Hopefully, it is simply a matter of BA updating its auto-response emails to reflect the diversity of passengers’ needs.  

Unusually, the Heathrow to Warsaw flight leaves from Terminal 3, rather than BA’s dedicated Terminal 5.  An added complication is the fact that the aircraft departs from a gate where there is no air bridge available and so transfer is via a bus and steps.  

Having encountered this problem in December, I asked the agent who met me from the bag drop whether he would be able to assist me all the way to the aircraft, and was assured that he would.  

The best way to start your trip

The best way to start your trip

This time, I had a short but pleasant stopover in BA’s lounge - there was even time for a pre-holiday glass of Champagne.  

The customer services lady in the lounge spotted me as I emerged from the bathrooms and told me she would just, “remind them about your wheelchair”.  

When I insisted that I needed assistance but not a wheelchair, she dismissed it with a wave of her hand.  

“You know what I mean,” she said.  

Of course, having been asked for a wheelchair, the new Omniserv agent turned up with one.  He soon ditched it though.  

Then there was the thorny question of whether he could come to the aircraft with me.  

“We’re not allowed to for security reasons,” he said.  

So I was left with a choice: either one of the BA ground crew would come on the bus with me to the aircraft or I could use the ‘high lifter’.  

For those unfamiliar with high lifters, imagine a box van that rises several meters into the air.  One is ‘loaded’ at ground level, the van drives to the aircraft door (the one on the opposite side of the plane) and the high lifter then ascends to the height of the aircraft.  

Such technology is no doubt incredibly useful when wheelchair-using passengers are boarding in the absence of an air bridge.  

The high lifter - the alternative way to board

The high lifter - the alternative way to board

I reluctantly consented to use the high lifter - only because it was already being deployed for another passenger with restricted mobility (PRM).  

In spite of BA’s fancy online booking system for assistance, Angela - an experienced purser who’s been 29 years in the job - said they would have to radio ahead to alert assistance in Warsaw.  

“Don’t worry, I’ll sort out the wheelchair,” she told me.  

When I reminded her that I wasn’t in need of one, she said that it was the only way to get assistance.  

So I have some helpful words of advice for BA, Omniserv and HAL: 

  • Make sure that all staff know that less than 10% of disabled people are wheelchair users - we are a diverse community and one size certainly does not fit all.
  • Helping disabled travellers onto aircraft where there is no air bridge is not rocket science - expensive resources like high lifters should only be deployed for those who really need them.  There should be an agreed procedure for everyone else - hopefully one based upon common sense.

In all likelihood, I will be undertaking exactly the same journey at Christmastime.  Let’s hope that some of these unnecessary wrinkles can be smoothed out before then. 

Thalidomide Woman Degraded and Humiliated by Major UK Retailer, M&S by Geoff Adams-Spink



Thalidomide Woman Demands Apology and Accountability From M&S CEO Following Degrading and Humiliating Treatment From Staff At Its Flagship Store

LONDON – A thalidomide woman – with lower limb disabilities caused by the morning sickness drug thalidomide – is urging the Chief Executive of one of the UK’s largest and most respected retailers to apologise and make amends for what she describes as “degradation and humiliating treatment” experienced at the company's flagship Marble Arch store in London.

Faith Russell-Taylor

Faith Russell-Taylor

Faith Russell-Taylor was born with extremely short legs and hand deformities as a result of her mother having taken the morning sickness drug.  On a visit to London – accompanied by three of her adult daughters – she visited M&S's Marble Arch store on May 20 to do some shopping for her grandchildren.

What followed demonstrates a catastrophic failure on the part of the company to meet the needs of disabled customers.  In the course of doing her shopping, she realised that she needed to visit an accessible toilet facility and was directed to the basement.  Finding the toilet occupied, she waited for some 20 minutes and eventually asked a member of staff for assistance.

The assistant refused, and said that only a manager would be able to help.  Eventually, a non-disabled woman emerged with her child (there was a parent and child facility nearby) and apologised to Mrs Russell-Taylor.  By this time, she was unable to contain herself and both she and her wheelchair was soaked in urine.

Having cleaned herself up as best she could, she proceeded to the womenswear department as her lower garments had to be discarded.  She used her jacket to protect her modesty.  She quickly selected a pair of denim shorts and asked to use an accessible fitting room in order to put them on.

Flagship store - second rate service

Flagship store - second rate service

The fitting room assistant refused to ask the non-disabled customer to vacate the facility in order for Mrs Russell-Taylor to be able to use it.  By now, she was feeling not only feeling degraded but extremely violated.  She never thought she would experience such disrespect and disregard from a company that so readily boasts of its excellent customer service.

The fitting room attendant refused to intervene, and informed Mrs Russell-Taylor that, “we don’t get many people like you here”.

Having had to wait several minutes for the customer to vacate the accessible fitting room, Mrs Russell-Taylor entered, put on the denim shorts and wheeled herself back to the attendant.  Mrs Russell-Taylor informed her in a low voice that she had put on the shorts and that she was now proceeding to the cashier in order to pay.

At this point, the attendant spoke loudly and clearly in front of a crowd of customers and insisted upon accompanying Mrs Russell-Taylor to the cashier.

“I couldn’t believe what was happening to me,” Mrs Russell-Taylor said. “Not only had I wet myself, travelled quite some distance within the store to reach the fitting room, but now I was being accused of being a potential thief, and I am sure this was because I am a black woman.”

Mrs Russell-Taylor completed her purchase and asked to see a manager who offered her ‘a nice cup of tea’.  However, by now, she felt too distressed to stay in the store and returned by taxi to her hotel, the Wembley Hilton.  Her trip and holiday plans with her daughters were all now ruined.  “All I could do was cry,” she said.

There she was contacted by one of the management staff, Neil Lazenby, who – upon hearing about the incident – dispatched two members of staff to speak to Mrs Russell-Taylor at the hotel. 

They apologised profusely, gave Mrs Russell-Taylor a bunch of flowers, a box of biscuits and a £100 M&S gift voucher.

“These representatives assured me that these gifts were not from the company but from themselves,” said Mrs Russell Taylor. “If they had been from the company, I would not have accepted them.”

Mr Lazenby subsequently contacted Mrs Russell-Taylor and her daughter and explained that the company would do ‘whatever it took’ in order to remedy the situation.

The matter was then escalated to Marks & Spencer’s Chief Executive, Marc Bolland.  Having reviewed the case and put in place some measures to avoid a recurrence of the episode, Marc Bolland’s office informed Mrs Russell-Taylor that the matter was now at an end.  In his opinion, the company had already made amends and refused to do anything further.

Faith Russell-Taylor - determined to succeed

Faith Russell-Taylor - determined to succeed

Mrs Russell-Taylor is part of a volunteer network of people affected by thalidomide, assisting survivors in North America.  She was born in Jamaica and now lives in Florida.  During the last days of her London trip, she had planned to take her three daughters to see Paris and had already purchased tickets for the Eurostar.

“I was so upset and humiliated that I felt completely unable to leave my hotel, never mind embark upon the short excursion to Paris,” she said.

When the Thalidomide Trust’s then director, Dr Martin Johnson heard about the incident, he was shocked by the change in Faith’s normally strong character:

“A vibrant outgoing personality suddenly afraid of going out in public - all because a major retailer does not think it necessary to protect the minimal provision they make for disabled people from their non-disabled customers,” he said.  

“I reassured Mrs Russell Taylor that ‘Marks and Spencer are a good store, they will make it up to you’, mistakenly as it now seems.”

Mrs Russell-Taylor contacted fellow thalidomider and disability equality expert, Geoff Adams-Spink. He is now representing Mrs Russell-Taylor (on a pro-bono basis) and is urging the company to do the right thing by her and to undertake a root-and-branch review of the way other disabled customers are treated.

“Companies that are not confident around serving disabled customers frequently make mistakes – but this is an order of magnitude I have never encountered,” Mr Adams-Spink said.  

“The letter written to Faith from the Chief Executive’s office is quite curt, mentions a few rather inadequate measures put in place by the company and then compounds the insulting and humiliating behaviour that she encountered by telling her that ‘we feel that our gesture by way of an apology, the £100 M&S gift voucher, flowers and box of biscuits already offered to Mrs Russell-Taylor demonstrates our regret about the poor service that she received’.”

Mrs Russell-Taylor has asked M&S simply to refund the Eurostar tickets and to pay for a short trip for her and her three daughters the next time that she visits London in the spring of 2015.

“American customers are, quite rightly, used to high standards of public service and considerable compensation when companies fall short of providing that,” said Mr Adams-Spink.  “What Faith Russell-Taylor is asking for is minimal compared with the sort of awards that an American court could reasonably be expected to make.”

Mrs Russell-Taylor says that unless the company meets her representative and engages in meaningful dialogue, with a view to bringing the whole sorry episode to a satisfactory conclusion, she will have little option but to start an online petition, demonstrate outside the Marble Arch store and take legal advice.

Have you been hissed at recently? by Geoff Adams-Spink

For disabled people, being hissed at is a constant bugbear.  Of course, I’m not talking about people making snake-like sounds in our general direction, it’s a new term I’ve coined for that catch-all scourge of our times, health & safety!  

Wheelchair using friends of mine are constantly being told that they can’t do this or that because they constitute ‘fire hazards’ and the like.  And we live in such a compensation-obsessed culture, that companies are being advised by their insurers to play it safe rather than using a bit of common sense.  

Hissing can come from the most unexpected quarters: on Saturday evening I was enjoying a swim at the Riverside health club, of which I’ve been a member since it opened in 1996.  I’m a regular user of the gym and use the swimming pool at least once a week as part of my on-going campaign to retain my musculo-skeletal mobility and to keep my weight down.  

Riverside's impressive 25m pool

Riverside's impressive 25m pool

A few years ago, I started to experience problems with my swimming technique.  I would often swim on my front and hold a float so that my head stayed out of the water rather than having to bob up and down as I had previously done.  I started to notice that my left arm went cold and I had pins and needles in the fingers of my left hand. 

When I spoke to my physio/massage therapist, she told me that keeping my neck back in that position and swimming some 1,000m each time, was trapping a nerve in my neck and would cause me even more problems if I didn’t re-think my technique.  

I’m fortunate in that one of my PAs, Sylwia, is an extremely able swimmer - she used to swim and dive competitively during her teens.  She’s also a fairly smart cookie.  

She told me I had to learn to swim all over again and that she would help me to do so.  

I had thought that I was a fairly competent swimmer, but Sylwia told me that my position in the water had always been wrong.  Actually, she is contemptuous of most of the pool users at Riverside: 

“They’re not swimming - they’re just mixing water,” she says.  

Once I started swimming properly, it was jolly hard work.  This was normal, Sylwia said, because I was now using my muscles properly and my position in the water was as it should be.  But in order to give me a bit of a helping hand, she suggested acquiring a pair of training flippers and a snorkel.  

No longer mixing water - the snorkel makes all the difference

No longer mixing water - the snorkel makes all the difference

I love the training flippers because they allowed me to glide through the water like a dolphin.  And the snorkel was handy because it meant that I could keep my head in the water and not worry about having to raise my head every few strokes to breathe.  

After a few months, Sylwia told me that I could get rid of the flippers because my muscle strength had improved sufficiently for me to propel myself through the water unaided.  I was a little disappointed at first, but now I’m very used to swimming with just my snorkel and goggles.  

Last Saturday, a young woman dressed in a tailored trouser suit was perched on the high stool where the lifeguards normally sit.  While I was swimming she came and had a word with Sylwia.  

Didn’t Sylwia realise, the duty manager asked, that equipment like snorkels and flippers contravened company safety policy?  

While its facilities are fabulous, Riverside has always been poorly managed - things have scarcely improved since it was taken over by Virgin Active.  

Sylwia wondered why there should be a problem with my snorkel.  

“Well, the thing is, it’s hard to check whether people are breathing when they use them,” the manager explained.  

When I’d finished my swim, I went to have a word.  I patiently explained that speaking to a disabled person’s PA, instead of speaking to them first, was extremely poor etiquette.  I went on to describe the reason for the use of my snorkel which, by this time, the duty lifeguard had already pronounced as acceptable to the besuited manager.  

I also pointed out the folly that lead to the assumption that someone who was swimming might not be breathing.  

“Yes,” she said.  “I can see that you’re a very strong swimmer anyway - much stronger than me.”  

Given that she had already confirmed that she was a trained lifeguard, I found this slightly disturbing.  More disturbing still was the idea that her smart business suit was appropriate attire in which to jump into a pool and rescue someone in difficulty.  

Now, I wonder what Virgin Active’s health and safety policy would have to say about that? 

Airport Assistance - Not Very Helpful At All by Geoff Adams-Spink

The following blogpost is being published after BAA, BA and OmniServ refused to take me up on the offer of a meeting to resolve a mess entirely of their making.



"Would you like to upgrade for just £79?" the BA website encouraged.  Since I was travelling alone and since it was nearly Christmas (December 23 to be precise) I decided I would.  It would be an early Christmas present to myself.


I arrived at Heathrow's Terminal 3 in plenty of time for the 1130 BA850 flight to Warsaw.  I imagined that, the security and baggage formalities complete, I would settle into the comfort of the BA lounge, perhaps update my social media feeds, read some emails and texts and even have a festive glass of champagne.


As is the way of these things, assistance was booked prior to travel by contacting BA's call centre. Choosing the option for disabled assistance, my call was transferred to someone who, from their accent, sounded as though they were in India.


"So you want a wheelchair?" she asked.


"No," I explained, "I'm disabled, registered blind if you want to know, but I don't use a wheelchair – not all of us disabled people do, you know."


“Well I don't think I can help you then," she said.  I've encountered this before: one has to become insistent, sometimes one has to mention the Disability Discrimination Act and its successor, the 2010 Equality Act and perhaps refer to someone a little more senior on the team. In the end, assistance was booked.  First hurdle complete.


When I rocked up at the check-in desk, I mentioned to the agent that help had already been booked and he picked up the phone to the company that provides assistance on behalf of Heathrow's owners, BAA.  This company is called Omniserv and its staff can be seen pushing their distinctive purple wheelchairs hither and thither within the confines of the airport.


"No, he's disabled but he doesn't need a wheelchair," the agent explained to his interlocutor. "What's that? You can't refuse assistance – let me speak to a manager."


I have a very good relationship with the diversity team at British Airways – they even very kindly invited me to watch the Paralympics in 2012 with a VIP meal and drinks service thrown in.  The company is a member of the Business Disability Forum of which I am proud to be an associate.


I had lunch at Carluccio's in Terminal 5 with representatives from BA, BAA and Omniserv.  I was invited to give my views of the service; I repeated my assertion that the three-way process - whereby a passenger books assistance with an airline, who then hands-on responsibility to an airport operator, which then sub-contracts to a service provider - was fatally flawed.  I told them that I and my fellow disabled air travellers were fed up with an over emphasis on wheelchair provision; with being treated like baggage instead of a person; with being consigned to the 'special assistance' holding pen instead of being treated with the same respect accorded to other travellers; with staff whose disability awareness is extremely poor and whose disability etiquette is frequently lacking.


The BA staff said that they would quite like to include customers' access preferences or requirements alongside other information stored in the profiles of members of its Executive Club: my meal and seating preferences are already known, why not my access needs on board an aircraft and while travelling through airports?  I checked recently to see whether this stunningly obvious feature had been added but received no response.


Omniserv were keen to impress upon me the quality and depth of their disability awareness training.  I'm not sure who wrote the series of e-learning modules that staff have to click their way through (just keep ticking another option until you get the answer right) but frankly they should ask for a refund.


Back at check-in, I was asked to take a seat while the agent did his level best to get some sense out of Omniserv.  About ten minutes later, a gentleman with a middle-eastern accent approached me – I took him to be an Omniserv employee – and asked if I required a wheelchair.  When I told him I did not, he said he was unable to assist me in that case.  I again impressed upon the check-in agent the necessity for resolving what was really a storm in a teacup, but one which was rapidly sending my blood pressure sky high.


Another 10 minutes or so elapsed and I then met Jasmine; looking smart in her purple coloured suit and just two days into her new job, she assured me that the situation would now be resolved.  When I explained that I had been denied assistance because I wasn't a wheelchair user, she said she thought that "someone is going to be in trouble for this".  I told her that I thought that was something of an understatement.


She then took me to the special assistance area (commonly known among disabled air travellers as the 'crip pen') where a supervisor asked me to wait while she entered my details into their computer system.  One of the Omniserv operatives, Nathanial, was summoned to assist me.  His chief concern seemed to be what he was going to do with his wheelchair if he assisted me without it.  "Pick up another one airside," his boss snapped.


With all the to-ing and fro-ing, even using the fast track security lane, I was now left with only 10 minutes or so in the BA lounge – barely time to nip to the loo, pour myself a refreshing glass of water and then head for the gate.


The BA crew on board flight 850 were their usual, helpful selves.  Nothing was too much trouble: my seatbelt was fastened and unfastened, my hand luggage stowed and my coat hung up, I was assisted with my food.


Having spent the flight sipping champagne and reading a soothing novel, I was ready for the last leg of my journey through Warsaw's Chopin Airport

Inclusion in action

Inclusion in action

What a difference: the employee who met me was polite, helpful and completely free of condescension.  He didn't meet the aircraft with a wheelchair and he quickly showed me where the nearest accessible toilet facility was, collected my luggage from the belt and assisted me through customs to where someone was waiting for me in arrivals.  The navy jacket worn by Wojtek and his fellow team members has three distinctive symbols across its back: in addition to the usual wheelchair-using stick man, there was the internationally recognised symbol for hearing and vision impairments.  This serves as a useful reminder, both for those being assisted and those offering the assistance. It's something that Omniserv might usefully take on board along with a long, hard look at staff training and other processes that demean and belittle disabled travellers – especially those of us who don't use wheelchairs.


What would I like the companies concerned – BA, Omniserv and BAA - to do about things?  Well, they could start by asking me (or any of the other suitably qualified disability equality consultants who are offering their services) to take a close look at what they're doing and suggest ways of improving.  Specifically, BA's call centre staff need to understand the distinction between 'disabled' and 'wheelchair-user' – they are not synonymous.


BAA needs to have a much tighter grip on the reins or it needs to provide the service itself: hiding behind contractual niceties does not excuse its outsourcing service to a company that is blatantly not up to the mark. I would like to take a close look at the service level agreement between BAA and Omniserv and check exactly how assistance is specified, what definition is given of disability and what the escalation and referral processes are when things go wrong.


However, it is Omniserv that is at the sharp end of this three-cornered hodgepodge: the company first and foremost, needs to acknowledge its mistakes; it needs to express, in terms, to its staff, contract partners and to the customers of the various airlines who operate out of Heathrow, that disability and wheelchairs are not one and the same; it needs to abandon the use of terms like 'special assistance'; it needs to make its ‘crip pens' more attractive - offer a range of seating, perhaps some complimentary tea, coffee and water, a large-screen TV showing one of the news channels and even Wi-Fi – not unlike the services available in an executive lounge in fact.


Omniserv's disability equality training needs close scrutiny: e-learning modules that allow the user to keep choosing a different option until they get the answer right are no substitute for face-to-face disability equality training delivered by someone with lived experience of disability.  Those of us who are in the equality business acknowledge that disability can be a difficult subject that needs careful unpacking: it needs demystifying and an injection of levity in order to leave staff feeling confident that their approach to a disabled person won't result in offence being caused and a complaint being raised.


The quality of staff recruited by Omniserv could also do with scrutiny: I imagine that it's not the most highly-paid job in the world, so it's absolutely crucial that those who are on the front line of this service have the right attitudes from the outset or are sufficiently open-minded to learn the job, given sufficient and appropriate training.


In many respects, the UK is an exemplar when it comes to provision for and attitudes towards people with disabilities. What a pity then that a disabled person visiting the UK for the first time would be given such a dreadful initial impression.

Fairytales for Grown-ups by Geoff Adams-Spink

First, I must declare an interest: like the male lead in this production, I have shortened arms and irregular-shaped hands caused by the morning sickness drug, thalidomide.  What’s more, Mat Fraser has been a close friend for several years and I’ve long been a supporter and an admirer of his work, especially when it’s to do with our common impairment.  Some years ago he wrote and staged “Thalidomide!! A Musical” which I saw no fewer than four times.  

Along with another ‘thalidomider’ (as we generally call ourselves) - Fred Dove of BBC World Service fame - Mat and I would regularly sit down over a curry and compare notes.  All three of us have media careers, so it was very often interesting to find out which projects we were involved in and what was currently floating our boats.  We would also share news of our domestic lives: we heard the news of Mat’s engagement and then wedding with his first wife, Patou, and then the gradual realisation that they weren’t meant for each other.  Mat would often talk wistfully about his artistic collaborator, Julie Atlas Muz, to the extent that we knew that their connection was more than simply artistic.  

Mat and Patou eventually separated (amicably) and he began to split his time between London and New York in order to spend time with Julie.  They were married in New York in 2012 and the wedding epitomised their extravert, alternative lifestyle - zombie schoolgirl bridesmaids and all.  I was extremely sorry to have missed it.

Julie is an award-winning burlesque performer, having been crowned Miss Coney Island and Miss Exotic World in the same year.  She shares Mat’s penchant for challenging audiences with bold displays of nudity and overtly sexual performances.  When they’re in town, I’m a regular visitor to a monthly, informal burlesque show called Sleaze, at Camden's Lockside Lounge which often culminates in a rousing performance of “John Brown’s Body” performed by Mat in military fatigues during which he and Julie simulate oral sex.  

Suggestively fruity - Beauty eventually falls for her Beast

Although this is a time of year when people traditionally think of introducing their offspring or grandchildren to the delights of live theatre, this performance is probably one best avoided.  It weaves the telling of a classic tale with the story of how Mat and Julie fell in love in real life.  It uses, to great effect, a sort of magic lantern picture show to recount the opening of the story and involves - in addition to the two principals - two young actors who serve as stage hands, puppeteers and in supporting roles.  

As ‘The Beast’ is ashamed of his deformed arms, he is initially presented to Beauty with Jess Mabel Jones and Jonny Dixon forming his arms and gesticulating convincingly.  Over time, Beauty persuades her Beast to lose his inhibitions, to abandon the artifice of his corporal supporters and to show himself as he really is.  

Helping hands - Jonny Dixon and Jess Mabel Jones become the arms of The Beast

For me, a thalidomide man, this was a poignant moment - I suppose we all harbour insecurities about our physical differences and these are exposed and explored by Mat and Julie as they begin to fall for each other, both within the story and in real life.  

From time to time, the narrative is interrupted and either Mat or Julie appear under a single spotlight to tell part of their own romantic journey.  We learn, for example, how Julie’s mother (a Ukrainian-born ophthalmologist who emigrated to the US) wanted to know why her daughter intended to marry ‘a cripple’.  Though shocked by her mother’s reaction, Julie finishes the story by saying how much she respects her desire to protect her daughter.  

Skilfully directed by Phelim McDermott, this is both a tough and a tender performance - certainly one that won’t leave the audience cold.  It explores notions of difference, the chemistry of romance and the passion that has brought together the Beast who is my friend and the Beauty with whom he has had the good fortune to fall in love.

Beauty and The Beast is at London's Young Vic Theatre until December 21 and will transfer to New York's Abrons Arts Center in March.