Blacking up isn’t enough

Some of you may be aware of, or even participated in the sort of disability awareness course where you have to use a wheelchair for a bit or use glasses that mimic tunnel vision. While these are well intentioned, they are about as much use to understanding real disability issues as covering your face with boot polish for a day and wandering about pretending to be black.

On the surface, these seem a good idea. Trying to navigate in a wheelchair does give you a tiny change in perspective. Wobbling about with glasses that make you dizzy may make you think. But disability is more than that. It’s not just the wheelchair, crutches, guide dog or whatever.

Disability comes with a whole bundle of stuff, tangible and intangible.

I’ve not seen any of these ‘simulations’ that successfully mimic the fatigue that a lot of disabilities bring. As well as conditions where fatigue is a factor such as ME/CFS and MS, just getting about with a disability can involve substantially increased energy use. An amputee with a single below knee amputation can use between 125% and 150% of the energy a non-disabled person would use to cover the same ground. Amputees generally walk 20%-25% slower than non-amputees so to keep up have to expend even more energy. Over a day this all adds up. As you become fatigued, your gait can become more uneven, resulting in even greater energy consumption. As a result, by the end of what’s a ‘normal’ day for a lot of people, you can be utterly knackered.

Another significant disabling factor that’s not well simulated is pain. Again this can be a component of the disabling condition or a side effect of things like callipers, prostheses or a wonky gait. It’s fairly common for a wheelchair to give you a sore backside or back issues unless you get the seating right in terms of posture and pressure management. Pain is distracting, emotionally wearing and fatiguing. Pain medication that is effective can cause drowsiness, making the ‘cure’ as disabling as the condition.

Living with a disability can be fairly stressful. You plan things but never know until you get to where you are going if a place will be accessible, will the staff be helpful etc. The interaction with professional agencies both health and non-health is also stressful. This again generates fatigue and is difficult to simulate ethically.

One thing that’s never simulated (as far as I know) is anything to do with continence. Imagine travelling somewhere and not knowing if there’s going to be a toilet you can use anywhere near. If there is one, will it be being used as a storage cupboard so you can’t use it even though it’s there? Will it be being used by someone who could use any toilet but they are too lazy or ‘important’ (I’m looking at you Iain Duncan Smith) to seek one out? When your distended bladder finally gives up, how will you get changed, get home and cope with the embarrassment?

Most of these ‘having a go’ sessions take place in a calm, ordered and supportive environment with the facilitator on hand to assist if things get too tricky. Real life isn’t like that. Disabled people regularly get abused in the street, refused service for all manner of spurious reasons and other everyday humiliations. This all adds to the burden of living with a disability.

Finally, these ‘have a go’ events are short lived. Half a day, or even a day in some cases and then you can take the blindfold off, unplug your ears, leap out of the wheelchair and go back to your life. For the vast majority of disabled people, we can’t. We have to live with this all day every day. We struggle through today, knowing we’ll have to do the same again tomorrow, the next day and the one after that. That knowledge that this is how things are and they are only likely to worsen over time is impossible to simulate. It’s something you can intellectually appreciate but the actual knowing; the awareness and the emotion that goes with it can only be acquired through living with something long term.

Events like this might go a tiny way to giving an inkling into the raw physical access needs of some disabled people but they aren’t pitched in this way. I’ve spoken to people who come out of them believing that they now ‘know what it’s like to be disabled’ and then tell me what it’s like to be me and what I need. This is as spurious as smearing cocoa on your face and imagining you know what it’s like to be black. It’s blacking up (or cripping up if you prefer) and it’s tokenistic. It’s the sort of thing public facing organisations do to show they are ‘listening’ and meeting the needs of disabled people. That’s rubbish. If you really want to know what disabled people need, ask them. They are the experts. Ask lots of them too as they are all different. I’ve lived all my life with a disability but I really only know about my type of impairments, I don’t know about being visually impaired, deaf or having a long term health condition. I wouldn’t be arrogant enough to assume that I did and offer an answer on behalf of those people. Open and proper engagement with a range of disabled people is the only way to develop truly inclusive service provision.


Crippled by the Commute

Back in September I got a new job. As well as the usual trepidation anyone gets with a new job, this one has the extra element of having to commute into central London by train. This is something I’ve never done before. Four months on, I’m able to assess how accessible the commute is as a disabled person. I’m a below knee amputee and have spina bifida too. I walk with a pronounced limp and find walking any distance painful and tiring. I also use a walking stick to assist me.

My commute is in two parts, the initial part is by train from Milton Keynes to Euston and the second part is by London underground from Euston to Victoria.

Depending on the time, I have a choice of train companies to get between Milton Keynes and Euston. Before 0715 Virgin Trains stop at MKC and after that it’s London Midland services. In the evening there are no Virgin trains to MKC from 1643 until 1843. The Virgin trains all take around 35 minutes and the London Midland ones vary from 30 minutes to over an hour, depending on the number of stops. As a result of this I usually end up getting a Virgin train to work and a London Midland one home. As this is a busy commuter route, all the trains are crowded.

Several things stand out from my experiences.

People seem to be unaware that a walking stick is used to help you get about and keep your balance, not just for show. On several occasions I’ve had my stick kicked or knocked away by people pushing past me to get on the train. Luckily I’ve not fallen over yet but I’m sure it’s only a matter of time.

There’s no way to guarantee a seat as a disabled person. London Midland don’t do seat reservations at all and you can’t easily reserve a seat on Virgin Trains when you have a season ticket. It was only through complaining about seating issues to Virgin via twitter that I found a mechanism for getting reservations, however this does require 24 hours’ notice, which doesn’t always work as the demands of my job mean I can’t guarantee when I’ll finish work.

Theoretically London Midland trains have priority seating for disabled people but this relies on me asking whoever is in the seat to vacate it, something I find hard to do and if they refuse there’s not a lot I can do about it. Speaking with London Midland customer service, they suggested that I contact the train manager to ask them to vacate instead. In practice, finding the train manager is impossible. On several occasions I’ve walked the length of the train and not been able to find them at all. This is not only tiring but as the train is usually so crowded, I’ve tripped over a number of people. There are always people standing on these services and I’ve had to stand on several occasions, something which leaves me in pain for a couple of days after.

Virgin aren’t much better, especially as they no longer have priority seats according to the train managers I’ve spoken with. Their suggestion was that I commute using a wheelchair as they can get people to move from the wheelchair spaces. This would be fine apart from having to find somewhere secure to leave the wheelchair as the stations at either end and I’d also have to pre-book assistance to get on and off the train. This has to be done 24hours in advance and would be for specific trains. This isn’t much use when my job means that I can’t guarantee which train I’ll be catching.

To make matters worse, three of my possible trains home in the evening are in the top ten most crowed trains in the UK running at between 148% and 201% of capacity according to Department of Transport research carried out in October 2013.

I have tried using the mobility assistance service. If I was an occasional traveller, this would be great as it would take me to the train and I wouldn’t have to trek across the station. However, the nature of the service means it’s not much use for the commuter. It has to be booked at least 24 hours in advance and for a specific train. My job means that I can’t always predict which train I’ll be catching so I’m unable to book in advance. You also have to arrive at the assistance point about 30 minutes before the train you have booked for. While I understand that this enables them to deliver their service more effectively, it does add 15-20 minutes a day to my commute. This service doesn’t guarantee a seat either so the negatives outweigh the positives.

It’s not all gloom and doom on the commute. On the tube there are clearly marked priority seats for those less able to stand. On nearly every journey I’ve had a seat offered to me by the person in one of these seats. The people offering the seats are all races, genders, ages and classes. There’s no ‘type’ of person more or less likely to offer a seat than any other in my experience. The staff at Euston in particular have always been really helpful too. The only times I’ve had to stand are where the tube is so crowded that people can’t see that I need a seat and there‘s no point struggling through the masses just to get one as a couple of stops on, there’s usually space. Despite my initial fears, the tube has been surprisingly accessible.

All in all there seems to be very little provision for the disabled commuter (as opposed to the disabled rail traveller) and the customer service people I’ve spoken with, while very willing to help, have little or no actual help they can offer me. On a couple of occasions it’s even been suggested to me that it’s my problem for choosing to travel during peak periods. I find this particularly annoying as I should have the same options as to when I work and travel as anyone else. I’ve worked hard to move on in my career and to make a living and situations like this make it much harder than it needs to be. This isn’t a dig at the people working for the train companies as most of them have been as helpful as they can be in the circumstances, just that the way the organisations and systems are run makes it effectively impossible for them to provide any practical help.

All I want is a system that makes it possible for me to travel to and from work with minimal added physical pain and as flexibly as any non-disabled person. It’s 2015, the initial Disability Discrimination Act was passed on 1995. Surely in those 20 years something should have been done about this?


An overheard comment the other week set me thinking about labels and person centred language, particularly with regard to disability. Two of the phrases that often get discussed are ‘disabled person’ and ‘person with a disability’. The latter is often said to be preferable as it puts the person first.

Then I started thinking a little deeper and thought what does disability mean in each phrase. The view I reached is entirely subjective, I’ve not discussed it with anyone and after all it’s just an idea in a collections of some bloke’s wafflings on the interwebs so I’m not claiming to be starting a movement or saying that this is the way people should be referred to.

Disability or the state of being disabled can be looked at a couple of ways. There’s the Medical Model approach, where disability is the thing that’s ‘wrong’ with a person that needs to be fixed or overcome by adapting the individual to fit society. The other way is that the individual is disabled by barriers that exist to their full participation in a society. This is the Social Model and separates out disability from the impairment that the person has.

‘Person with a disability’ does seem to fit the medical model in that it’s talking about a person with a ‘thing’ rather than a state of being. This is still better than the old medical model labels of ‘cripple’, ‘spastic’, etc.

With a social model hat on, ‘disabled person’ seems a much better fit. I’m a person in society and I’m disabled by the barriers it places in my way therefore I’m a disabled person. I’d also say following this way of thinking that I’m a person with an impairment.

This, in a nutshell, sums up why I prefer the term ‘disabled person’ as it’s a reminder that I am disabled by the society I live in rather than something inherent to me.

The Work Programme – Making things harder

After you’ve been unemployed for a year, you have to volunteer for The Work Programme to carry on receiving Job Seeker’s Allowance. This is a strange definition of volunteering as it’s effectively compulsory. I already do genuine voluntary activities to maintain my work related skills and benefit my community.

The Work Programme is ‘delivered’ on behalf of The Department for Work and Pensions (DWP) by a number of providers, most of whom are private sector. The one I have to deal with is Ingeus, an Australian company. They are based in a building that has a number of access issues:

  • The doors require a force greater than the 20N specified in Part M of the building regulations;
  • The lifts are on a mezzanine level, not the ground floor;
  • This level is accessed by a ‘porch lift’ that has no operating instructions, no safe working limit, a faulty safety interlock and side rails that are loose;
  • The handrails on the stairs are flat bar stainless steel with sharp 90° edges that also don’t comply with part M;
  • There is no accessible parking within 300m of the building;
  • The access to the building is via a shared use foot and cycle path.

None of these make an already stressful experience any easier for disabled people.

The provision for everyone inside isn’t much better. There are only four computers available for people to use for job searching and only five seats for people waiting to see their advisors. Today, this resulted in more people waiting than there were chairs. When you get to see your advisor, there isn’t any privacy, with other clients within 2-3 feet. Given that some of the issues that the work programme is meant to address are health and wellbeing related, this can’t be appropriate.

Part of their contract with DWP states that they have to provide two mandatory bits of training – Job Search training and Interview Techniques. While I agree a large number of the people referred to them will need help with this, it’s a waste of time and resources to put everyone through it regardless of need and/or ability. My interview technique is, according to feedback, excellent. Where I have lost out has been to other candidates with slightly more experience in specific areas. This is not something you can learn to overcome. When I used to contract I would have an interview every two to three months as part of getting my next placement. This really hones your skills. These mandatory courses are exceptionally blunt instruments that won’t give the right support to those who need it and will alienate those with a good grounding in the skills.

When you get ‘put on the books’ of a provider, responsibility for reimbursement of travel to interview expenses shifts from Job Centre Plus (JCP) to the provider. A couple of weeks ago I had two interviews and my first appointment with Ingeus. I’d got the expenses forms in advance from JCP as I was supposed to do, attended the interviews and then submitted the forms. I was then told that Ingeus were responsible as I had been signed over to them before the interview dates, despite not having had an appointment with them. Today I went to Ingeus and tried to get reimbursed, only to be told that as I hadn’t got the travel pre-approved they couldn’t pay me. As one of the interviews was in London and the other was in Cambridge, this involved considerable expense. Train failures on the day of the London interview meant I had to drive, despite having already bought the tickets (to save money). As a condition of getting JSA, I have to attend every interview I’m offered. As a result of this fiasco, I’m over £120 out of pocket. JSA is £67.50 a week, so this is a significant amount. Something like this throws your whole budgeting out for weeks.

It seems to me that the whole Work Programme is poorly executed, under resourced, designed to alienate and not joined up with the rest of the process. As well as fortnightly appointments with Ingeus, you also still have to attend fortnightly appointments with JCP. This duplication is a ridiculous waste of resources and seems further designed to emphasise the control JCP has over your life. The aim is laudable, but the system falls way short and will only serve to waste public money, often generating large private sector profits. Not exactly the best use of limited resources in the current economic climate.

Hate Crime: Sticks and Stones….

There have been a stream of horrific cases where disabled people have been attacked, tortured, held hostage and killed ‘just’ for being disabled. They grab the headlines for a day or two and then vanish. Despite all these cases, there hasn’t been a ‘Stephen Lawrence’ moment for disabled people, where the mainstream is so shocked by a case that policy makers have to react. Luckily this level of violence is rare and not experienced by most disabled people.

But there’s the problem. Most abuse is more low grade, frequent and unchallenged. Katherine Quarmby calls this ‘background noise’ in her excellent study of disability hate crime “Scapegoat”. This background noise is the name calling, minor bullying, anti-social behaviour directed at disabled people. It occurs throughout our society, where ever disabled people go.

I’ve had conversations where non-disabled people have told me to be more ‘thick skinned’, to shrug off the comments. I can see where they are coming from but a line has to be drawn. All the serious hate crimes started out as name calling. When the violence started, in most cases, bystanders did nothing. Some even spectated or took pictures and video with their phones. This is all permitted by the background noise of low level abuse that helps de-humanise disabled people in the eyes of the public.

If we all stand up and take a zero tolerance approach to hate crime directed at us then we can change things.

  • The background noise will get less
  • Media companies will have to take our complaints seriously
  • The police and local authorities will no longer be able to say “It doesn’t happen  here as we have no record of it”

These changes will reduce the more serious offences as they will be seen as far more unacceptable and response and prevention will be better funded.

It won’t be easy and it won’t be quick and not every disabled person will be able to do it but that shouldn’t stop us. Those of us that have the capacity to report and follow up should hold the authorities to account. If we can’t feel safe in our homes, on public transport, while going out and on the internet, all the rights we have fought for will be compromised.

These are just my thoughts on the issue and I’d love to hear what you think, whether you agree or disagree.

Famous for Five Days

The Red Cross has a weekly feature where they chat to various staff and volunteers called Famous for Five Days and this week it was my turn. It’s only available on their intranet so I’ve included it below for anyone who might be interested.



Dave has been a Red Cross fire and emergency support service (FESS) and emergency response volunteer for nearly two years. He talks about Steampunk, makeshift beds, and his admiration for one-footed Vikings.

Why did you decide to work for the Red Cross?

I’d heard about the work of the FESS and I wanted to help make a difference when people need it most. With a day job background in emergency planning it seemed the best fit for my skills. I also did the Disaster Response Challenge in 2008, which gave me a good introduction to the Red Cross as well as being a fun weekend.

 What’s the worst job you’ve ever had to do?

I worked for a unit trust company for four months and we had to work ten-hour days and seven-day weeks because it was the ‘company way’. Sitting doing bookkeeping for that long is appalling. It taught me that to be any good you need to balance work and real life.

Which three people, living or dead, would you invite to a dinner party?

Mark Steel, the comedian, as he has a way of bringing people and issues to life. Billy Bragg, the singer, as I’ve loved his music since I was in my early teens and he’s introduced me to all sorts of areas of life. Finally, the Viking known as Onund Treefoot. He adapted to having one leg so well he was known as being “as good as any man in Iceland, be he whole or not”.

What is your favourite book?

I’m not sure I really have a favourite, as there are a number of books I love. The book I’ve re-read the most is The Difference Engine by William Gibson and Bruce Sterling. It assumes that Charles Babbage has managed to build his difference engine and computing exists in the Victorian era, being mechanically rather than electronically based. The altered version of reality that this presents is a wonderful setting. It was one of the forerunners of the Steampunk movement.

What is your earliest childhood memory?

It was being tucked into a bed made up on the back seat of my parents’ Morris Minor for a very early start on a trip to see family up in Lancashire. It used to take eight to nine hours or more from Southampton. How lax about safety in cars we were back then!

What keeps you awake at night?

I’ve always been a poor sleeper, so sometimes almost anything does. I think the thing that can keep me awake reliably is going over mistakes I’ve made in the past. Not very helpful and a habit I need to get out of.

What would be your ultimate fancy dress party theme?

I think it would have to be ‘What did you want to be when you grew up?’. It’d be really interesting to see what we all dreamed of being and where we ended up. I’d have to go as a helicopter pilot or a marine biologist – very different from the jobs I ended up doing.

Who or what is the love of your life?

I’m a trustee for a disability charity and I’m finding that more and more rewarding. Being able to help shape change that improves people’s lives is wonderful and something I hope to be involved in for a long time to come. Fairness, equality and supporting vulnerable people are some of my passions.

Who would play you in the film of your life?

John Cusack I think. He’s a taller, much better looking version of me and his films seem to have a similar sense of humour to mine – excluding 2012, which is wonderfully over-the-top.

 You’ve won £1 million. What’s the first thing you’d buy?

I’ve always wanted a proper Land Rover that I could get really muddy so it’d have to be that. It’s something I have no use for from day to day, so it would be my lottery splurge.

Turning Off Twitter

Part of the fallout of the recent riots is the usual blame for the internet for making it happen. According to the politicians and the media, the internet is the source of all ills. Like any human endeavour it reflects the best and worst of us. Research by the Guardian shows that the majority of tweets about the riots were reacting to it, rather than encouraging/arranging it. Boyd Neil has blogged about the political aspects of this and the potential implications of censorship, so I’m not going to cover that. What I’m interested in is the practical implications of restricting social media in these circumstances.

If you speak to any emergency planner or police officer responsible for ensuring public safety they’ll tell you that getting timely, accurate information to people is one of the hardest aspects of responding to any major incident. This is considered so important that there is a National Steering Committee for Warning and Informing the Public  to share best practice and improve the resilience of communications in an emergency. A number of police forces across the UK successfully used Twitter to communicate the reality of the situation during the disturbances. Their tweets refuted rumours and promoted calm. For a lot of agencies, this was their first ‘real’ use of Twitter in a live event and seemed to be fairly successful. Taking this communications channel away would be a serious retrograde step.

There are also practical issues with ‘switching off’ Twitter and the like.

Would the URL be blocked from the UK? Would this stop third party apps from accessing it? What about the impact on non-UK users?

If the services are left intact but the means of accessing them are suspended then there are serious implications. You’d have to shut down the dial-up and broadband access in an affected area as well as stopping mobile phone data traffic. The knock-on effect from this is huge. Legitimate businesses would suffer losses, warning and informing information wouldn’t get out to the public, some communications between responders would be affected, and lives may be at risk. The increasing use of satellite broadband would also be an issue too.

If the whole mobile network has to be shut, rather than just the data service then the situation that arose on July 7th 2005 would be duplicated. Due to the invocation of Access Overload Control (ACCOLC) around Aldgate, the majority of phones carried by responders on scene were unable to access the network. Paragraph 3.10 onwards in the London Assembly Report explains this in more depth. ACCOLC has now been replaced by the Mobile Telephony Preference Access Service (MTPAS) but the number of handsets that can be registered per organisation is limited.

There’s also the possibility of jamming equipment similar to that used by the military in Iraq and Afghanistan to prevent remote detonation of IEDs being used. This can be a bit ‘clumsy’ and restrict legitimate communications working due to the wide frequency bands it covers.

After the car bomb in Oslo, people were using Twitter to offer shelter and support to those affected by the bombing and encouraging everyone to make their wifi freely available so people could get in touch with their families. Post riots, community clean-up events were organised by Twitter. If suspended, this community resilience and support would be lost.

To me, it seems that closing down these networks would create more practical and operational problems than it would solve. Truly dedicated criminal groups would use other mediums (PMR radio for example) to co-ordinate things if they do do that sort of thing. The individuals who’ve been prosecuted for ‘incitement’ on Facebook seem to be at worst misguided rather than earnest rabble rousing criminals and don’t reflect the vast majority of users of social networking. There is also the risk that the suspension of a communication channel would increase the fear of people affected as their access to ‘live’ information would be severely reduced.