Spasticus Autisticus: Ian Dury and disability

I've been reading Richard Balls's updated, authoritative biography of Ian Dury - Sex and Drugs and Rock and Roll. Richard incudes material from several people about Ian's disability and how it may have influenced his personality. I don't disagree with any of their (and his) conclusions: I think, though, that his disability may have played more of a part in the formation of Ian's public and self-image than even they imagined.

Dury wrote the anthemic number Spasticus Autisticus in 1981 in response to that year's designation as International Year of Disabled People. He felt that having such a year was patronising. The song is a cross between a battle cry and a plea for understanding. The BBC allegedly banned it from its playlists because of the provocative lyrics: the term spastic was by then beginning to become unacceptable.

The song later became central to the plot of Reasons to be Cheerful, a piece by disabled theatre group Graeae. It features Ian's usual witty rhymes, such as

I wibble when I piddle
Cos my middle is a riddle

 But it is in the equally un-PC verses that his attitude to disability, and to society's reactions to it, is most overt.

Hello to you out there in Normal Land
You may not comprehend my tale or understand
As I crawl past your window give me lucky looks
You can be my body but you'll never read my books

Despite a solidly middle-class upbringing, Dury viewed himself as an outsider. He gathered other outsiders around him socially and to make music. His first band, Kilburn and the High Roads, numbered at least two other disabled people among its members: surely more than would be expected by chance. Was Ian, perhaps semi-consciously, seeking to surround himself with others who shared his personal experience of societal exclusion?

Ian became disabled suddenly, as a small child, as a result of polio. From then on, he had to wear a heavy, uncomfortable calliper on his left leg, and had little use of his left arm and hand. Sudden disability or severe illness can have a huge impact on an individual's psyche. Enforced separation from family and friends could only have added to this. Ian was young enough when illness struck not to have had to deal with the disruption of his own plans for his future, but as a previously active wee boy he must have found enforced immobility hugely frustrating.

This may have been influential in his need as an adult for control over his life. Rock frontmen are famous for their demanding, overpowering personalities: they need them to be good at their jobs. Ian seems to have developed it into a high art, though. He hired and fired band members without consultation, moved back and forward between the house he rented with his then wife and his girlfriend's flat, and demanded control over the songwriting process even with supposed collaborators.

Following lengthy stays in hospital and rehabilitation unit, Ian was sent to a boarding school for kids with disabilities. The regime there seems to have been Spartan: the children were forced to be very independent physically, bullying was commonplace, and there were examples of sexual abuse. This could lead to the children becoming detached emotionally. On his return home from this school, Ian was enrolled in a fee-paying boarding grammar school, where he was bullied as a result of his disability.

As an adult, he became very manipulative, "using" his disability when necessary to get what he wanted or get out of doing things. He used his undeniable personal charm to convince people to drive him around, carry things, and generally do his dirty work for him. He was also very possessive about those close to him.

Dury could be promiscuous, and certainly delighted in his attractiveness to women. He's reported as being surprised that women found him attractive. Our culture tends to portry disabled people as asexual: unaware of and uninterested in sex. We are also portrayed as sexually vulnerable: Ian claimed to have experienced sexual abuse as a disabled child at boarding school.

Some disabled people rebel against this stereotype by becoming almost hypersexual. It's possible that this is what happened to Dury. Increasing fame, and the inevitable groupies that came with it, gave him the opportunity to demonstrate his "normal" sexual appetites.

So how significant was Ian Dury's disability in the development of his charming but often abrasive personality? I believe it was extremely influential. But without it, he would possibly never have been driven to develop his distinctive songwriting voice and overwhelming stage presence.

 

Want to understand MS?

Today is World MS Day 2011. I could write forever about MS and how it affects me. Instead, I'm just going to copy and paste an email forward I once received. I think it shows what having MS can be like pretty well.

Understanding MS

When we say we can't do something because we don't feel well, put yourself in our shoes by using the examples of our symptoms below

What You Can Do To Understand:
Painful Heavy Legs
Tightly apply 20 lb ankle weights and 15 lb thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how are you feeling?

Painful Feet
Put equal or unequal amounts of small pebbles in each shoe then take a walk. If we are mad at you we would prefer needles to pebbles.

Loss of Feeling in Hands and/or Arms
Put on extra thick gloves and a heavy coat then try and pick up a pencil. If successful stab yourself in the arm.

Loss of Feeling in Feet and/or Legs
Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

TN (Trigeminal Neuralgia)
Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw, preferably daily.

Uncontrollable Itching
Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments. Wear them for an entire day.

Tingling
Stick your finger in an electrical socket - preferably wet.

Tight Banded Feeling
Put 12 inch wide belt around you. Make it as tight as you can and leave it there for the entire day. How’s your breathing?

Injections
Fill one of our spare needles with saline solution - saline won't hurt you. Give yourself a shot every time we do a shot.

Side Effects from the Injections
Bang your head against a wall, wrap yourself in a heating pad, wrap your entire body tightly with an ice bandage then finally treat yourself to some food or drink that's gone off.

Trouble Lifting Arms
Apply 20 lb wrist weights and try and reach for something on the highest shelf in your house.

Spasticity
Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves. Then go dancing.

Poor Hearing/Buzzing in Ears
Put a bee in each ear and then put a plug in each one...Bzzzzzzzzzzzz zzzzzz

Balance and Walking Problems
Drink 100 proof alcohol and then sit and spin in an office chair for 30 minutes. Now get up and see what happens.

Urgently Needing to Pee
We put a 0.5 litre remote controlled water bag and drip tube in your pants and point out 2 restrooms in a crowded mall. Then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

Bizarre and Inexplicable Sensations
Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day.

Pins and Needles
Stab yourself repeatedly with needles all over your body.

Dizziness (Vertigo)
Sit on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

Fatigue
Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

Cognitive Function (Brain Fog)
Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real (without killing yourself of course) take the sleeping pills with a small sip of wine.

Bowel Problems
Take a 4 day dose of an anti-diarrhoea medicine followed directly by a 3 day dose of stool softeners. Repeat for a minimum of 3 weeks. At the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appear.

Burning Feeling
Make a full pot of boiling water and then get someone to fill a water pistol with the boiling water and shoot it at you all day long.

Intention Tremor
Hook your body to some type of vibrating machine. Try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

Buzzing Feeling When Bending Head to Chest (L'Hermitte's)
Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

Vision Problems (Optic Neuritis)
Smear Vaseline on glasses and then wear them to read the newspaper.

Memory Issues
Have someone make a list of items to shop for. When you come back that person adds two things to the list and asks why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

Foot Drop
Wear one swimming flipper and take about a 1/2 mile walk. Nothing else needs to be said for this one - you'll get it.

Depression
Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

Fear
Dream that you have lost complete feeling in your feet. When you wake up you wiggle your feet, and they don't move. Think about this every night, wondering whether something on your body won't work the next day when you wake up.

Swallowing
Try swallowing the hottest chilli pepper you can find.

Heat Intolerance - Feeling Hot When it's Really Not
You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel. Even a person without MS would feel bad.

Now add all of the above symptoms - welcome to our world!

Finally... after subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counselling is the answer.

We don’t want pity – we just want understanding!

Not everyone with MS is going to get all of those symptoms - it's a hugely variable condition. And there are other symptoms that haven't been included. Still, I think it gives a pretty good introduction to what MS is like. 

A good place to find out more about MS is the MS Society website.

Suicide tourism: it's no holiday

An important vote took place recently in Zurich. The electorate were asked whether assisted suicide clinics like Dignitas should be allowed to continue offering their services to people from outside the area.

Switzerland has allowed assisted suicide since 1941, as long as it is not performed by a doctor, and the person helping has no vested interest in the death. Because assisted suicide remains illegal in much of the rest of the world, clinics like Dignitas have grown up to help visitors to the area to die.This is suicide tourism - people wanting help in dying travelling around the world to areas where assisted suicide is legal.

The founder of Dignitas, Ludwig Minnelli, claims that of those accepted as patients by Dignitas, over 70% never actually use their services. They do not plan to die, but are seeking insurance in case their illness becomes intolerable.

There’s a particular dilemma for people with progressive conditions who feel they may want to take their lives at some time in the future. Do they kill themselves now, when they don’t want to die but are still physically able to do so? Or do they wait until they feel the “right” time has come, by which time they’re no longer able to do the deed? I believe that this is why some people with progressive, non-terminal conditions seek out clinics like Dignitas.

In some cases, people want to die precisely because their condition is not terminal. They cannot bear the thought of their situation continuing indefinitely.

Jack Kevorkian, an American pathologist, claims to have helped at least 130 people to end their lives. After a videotape he had made showing him helping someone to die was shown on television, he was convicted of second degree murder. He was released from prison on parole in 2007.

Kevorkian claims to be an advocate for the terminally ill, but critics have discovered that at least 60% of those he helped to die were in fact not terminally ill. Counselling was apparently perfunctory, with no psychiatric examination, and at least 19 patients died within 24 hours of meeting Kevorkian for the first time. In at least 17 of the cases, with people complaining of chronic pain, Kevorkian did not refer them to a pain specialist. In three cases, autopsies showed no anatomical evidence of disease at all.

The data on those helped by Kevorkian also show some concerning anomalies. A substantial majority of his "clients" were female, and most had a disabling, long-term, non-fatal illness. Many listed MS as their reason for seeking death. Why were women with MS so much more likely to seek Kevorkian's services than others?

Reasons for seeking Kevorkian's help included having a disability, pain, and "being a burden". This last is particularly concerning. It would be all too easy, for instance, for interested parties to make a disabled person, already oppressed by society's attitude to disability, feel that they were a "burden" and should seek to die.

By his extreme and possibly biased actions Kevorkian has done the assisted suicide movement no favours. Any legalised assisted suicide scheme needs robust safeguards to make sure that those seeking its help have received counselling, have had the chance to receive good quality palliative care, and as far as possible have the chance to lead a full and fulfilling life.

The result of Zurich's vote? Suicide tourism can continue in the city. Over the Atlantic in the USA, it  has been reported that Kevorkian, now 82, is in hospital with pneumonia and kidney problems. I wonder whether, and if so how, his views have changed as a result of his own ill health?

Louder than a bomb

There's a bomb waiting to go off. It will affect us here, in the UK, as well as most of the rest of the developed world. It's called the demographic timebomb.

In a previous post I spoke briefly about the changing age structure in Scotland, and the increasing proportion of older people in the population. The demographics of a population are any characteristics that can be measured - in this case age. The demographic timebomb is the term used for the increasingly top-heavy age structure of the UK population, and of many others in the developed world.

Historically in the UK, the largest group in the population was children, then young adults, and so on. With decreases in infant and child mortality, along with other social changes, people are tending to have fewer children.

At the other end of the age scale, advances in medicine mean that people are tending to live longer. Accidents and illnesses which would previously have been likely to cause death are now survivable.But this survival may well be with disability: as you get older, you're more likely to be disabled anyway, because of conditions like stroke, heart disease and dementia.

The "bomb" part of the demographic time bomb is that with increasing numbers of older and disabled people, and fewer children moving into productive adulthood, increased financial pressure is put on the working population to fund care and pensions. There is also a smaller pool of adults to work in the health and care sectors.

Inconveniently for some of the more swivel-eyed right-wing commentators, who rail against the higher (on average) family sizes of some immigrant groups in the UK, it is these same larger families that may protect us against the demographic time bomb. The larger family sizes increase the proportion of children and young people in the population and growing up into productive adulthood, while immigrants to the UK are considerably more likely than native-born individuals to work in healthcare.

So how much fallout will there be from the demographic time bomb? All we can do is work on projections of the future, and they're dependent on many factors. But if you can? I'd be sticking some money under the mattress.

It wasn't my intention...

...to do an accessibility audit of a hotel, two taxis and a theatre in Cambridge. That's kind of how it worked out though.

The purpose of the trip, and the best bit, was seeing Uncaged Monkeys. Hard to explain, but imagine a particle physicist (Brian Cox), a mathematician (Simon Singh), an epidemiologist (Ben Goldacre) and a comedian (Robin Ince) talking about science and cracking jokes...it were right good. Nerdgasms all round the theatre!

So the actual show was great - but one way and another, there were a lot of complications to do with travelling and accommodation.

I drove to Cambridge. I was staying overnight in the Holiday Inn Express, Cambridge, where I'd booked an accessible room. Now tell me: if you were designing a hotel, which floor would you put the accessible rooms on? You know, the rooms for people with mobility problems? People who maybe can't manage stairs too well? Yes that's right! The 1st and 2nd floors! Which is clearly a particularly excellent piece of planning when the lift has broken down, as it had.

Now, I need to stress here that the staff could not have been more helpful than they were. They very swiftly allocated me to a standard room on the ground floor. Since it emerged that I couldn't actually get into the room in my wheelchair due to the layout, one of them even came along and propped the second bed on its end against the wall, giving me lots more room to move around. Nice, friendly people.

Also, the tables in the restaurant area were high enough to get the control pod of my power wheelchair underneath. No small thing, I can promise you, having dropped many a hot meal into my groin before now because I couldn't get anywhere near the table. Plenty of room to maneouvre round the room, and attentive but not irritatingly so staff.

So, while I can't comment on the accessible rooms (not having been in one), the hotel in general gets a thumbs up. The dining room (where you also have breakfast) is very accessible, and I found the staff extremely friendly and helpful.

Next...the saga of the taxis.

I asked the hotel to book me a wheelchair accessible taxi, to take me to the theatre, and in due course one arrived. The driver clearly didn't use his wheelchair ramps all that often, though...

He eventually managed to get them extended (fully extended, at my request) and attached to the taxi. But my wheelchair is a bit idiosyncratic. The front wheels are very close together.

In "channel ramps", like this, it can be impossible to get the ramps placed so that they're both close enough together for my front wheels, and far enough apart for my back wheels. It depends on the width of the channels. This taxi had channel ramps. Narrow ones. We just about managed to get the chair into the taxi, but at the other end it was impossible for me (going backwards, with the taxi driver out of sight behind me yelling "This way!" and randomly grabbing the chair handles) to get the wheels lined up right. Eventually, the taxi driver and a nice passerby had to lift the chair out, and I had to clamber down the stairs. Fortunate I could, really.

Once I was on level ground again, I phoned the cab company. I explained that I'd like to use their company again to get home: as a visitor to Cambridge, I didn't know any others. But I needed their assurance that in the late evening, there would be a cab on with a one-part ramp (like the one above). After some muttering and clicking of keys, I was promised there would be. After the show, I duly phoned up. I know you know what's coming...no cabs with one-part ramps.

So, after I had a little shout at them, they gave me the number of another cab company. They turned up within about 5 minutes, which was not at all bad. And the cab did indeed have a one-part ramp. Unfortunately it was also rather short, and the street had a ferocious camber. Meaning that if I'd gone up the ramp where he initially parked, my head would have been touching the tarmac. Probably not a good plan...

And finally in this little roundup of Cantabrigian accessibility, the theatre - the Cambridge Corn Exchange. It's an old building externally, which has clearly been very extensively adapted and modernised internally, and seems generally very accessible. I was in a box right next to the stage, with a great view. Three things I noticed...

1. Once you're in the disabled loo, it's impossible to close the door without turning right round, going half way out again, grabbing the door handle, and reversing back. When I went, another theatre-goer spotted my predicament and closed the door for me - but you don't necessarily want to broadcast to the entire foyer that you're going to the toilet, y'know?
2. The "sill" into the box is quite high, considering it's meant to be level. The other wheelchair user in the same box as me had a manual chair, and I could see he was having a bit of a struggle with it at times.
3. The lift is one of those irritating ones where you have to hold the button all the time you're in there. All well and good, as long as you have the hand strength to do that, and as long as you can twist round in your seat to do it.

Oh and by the way. Motorway services having the disabled loos right at the furthest corner away from the entry door. What's that all about?

My Ian Dury

This was originally a guest post at Sex & Drugs & Rock & Roll, the blog of Ian Dury's biographer Richard Balls.

Ian Dury was part of the soundtrack of my teenage years. His husky, intensely sexual voice and driving beat were with me through my transition from childhood to womanhood. He, and his music, have always been special to me.

When I became disabled, Ian began to mean even more: his polio had never stopped him from achieving what he wanted, getting where he wanted to be. That’s just one reason I was so thrilled when I was offered the chance to be an extra in the film sex&drugs&rock&roll, starring Andy Serkis.

A friend who works in PR told me she was going to be an extra, and I begged her to ask if they could use someone in a wheelchair. They could! I know extras were recruited through the fan club, and also through social media like Facebook.

We were to be in the “mosh pit” for the concert scenes and, as a wheelchair user, I managed to be front and centre for just about every scene. The atmosphere was great, and Andy was startlingly good as Ian. He came across as a really nice guy in between takes, as well. I’ll never forget the joke about the new flavour of crisps…

Being an extra involved lots of hanging around, retakes, and – to be fair – some boredom. And it’s not the way to get rich, either. It also involved moments of sheer exhilaration, when Andy and the band were performing. Overall, I had a great day. Can I do it again please?

A new updated edition of Sex & Drugs & Rock ‘n’ Roll: The Life of Ian Dury which tells the inside story of the movie was published on 3 May by Omnibus Press.

Independence, Demographics, and Medicine: the future of care in Scotland

Let me take you forward in time a few years. Five, ten...who knows, exactly? But there's been a referendum, and Scotland is now independent from the United Kingdom of Bugger Off Scotland (or whatever it's going to call itself. A Royal Commission on the subject has been set up, and is expected to report in 5 years).

As a proud Scot, currently exiled in not-so-leafy London suburbia, I head back home, back to the future, in my wheelchair-accessible De Lorean. What support can I expect as a disabled resident of newly independent Scotland? And how long can that support realistically last?

The manifesto of the Scottish National Party (SNP) would seem as good a place to start as any - the SNP, the first party to secure an overall majority in the Scottish Parliament since it was established in 1998.

The previous SNP-dominated coalition introduced free personal care, and there was a commitment to continue this in their 2011 manifesto. The independent Sutherland review, published in 2008, addressed concerns about differing use of criteria and waiting lists between different local authorities: a postcode lottery, in fact.

All well and good. But is the reality as good as the rhetoric? And the money to fund the personal care, and the free prescriptions, has to come from somewhere.What other services will be plundered to pay for personal care? Will the currently able-bodied majority continue to accept this allocation of funding?

Under independence, Barnett formula funding from Westminster ceases. Before we wrested back sovereignty, Scotland's funding from central government depended on a complex formula. It was devised in the 1970s, and was never intended to last long: the intention was to ensure that any change in public expenditure in one area leads to a change in public expenditure in other areas proportional to their population.

A higher amount per capita was allocated to Wales, Scotland and Northern Ireland (listed in increasing amounts) than to England, but the advantage was eroded over time, If, for instance, an increase in expenditure of 4% was needed in real terms to keep up with inflation, the grant was only increased by 3%. This means that in fact the budget was reduced.

In my newly independent homeland, this will no longer be a issue. But equally, we will no longer be gaining the advantage of a larger grant than we are contributing in taxation. As our chancellor writes his first budget, now needing to raise taxes as well as spend them, he will have to have an eye to his party's previous promises about care. Will he have to increase taxes above what we were previously paying as part of the UK? Would that be acceptable to the population?

The Scottish lifestyle is notoriously poor: for those who're not aware of it, I'm spending my time at the moment giving an enthusiastic demonstration for my neighbours in the aforesaid suburbia. Smoking, drinking, fatty foods - including of course the famous deep fried Mars Bar. (I've never had one. Honestly and truly.)

Since the late 1990s, Scotland has had a falling population, and a growth in the proportion who are old or "oldest old" (usually taken as those aged 85 and above). In 2008 around 98,000 Scottish residents were 85 or more, most of them women, and it's projected that by 2033 there will be 259,000. A huge increase.

Disability is more likely with age, and more likely in those of us who have indulged in an unhealthy lifestyle. While some of those over-85-year-olds will undoubtedly be hale and hearty, and see me off the planet, many of them will be or become disabled and need residential or home care. There's a huge personal care bill just round the corner for the new Scottish parliament.

At the same time, there are more younger disabled adults, because of improved medical care. Children who would previously have died at birth or as babies now survive, disabled. People have major accidents or illnesses: thanks to modern medicine they don't die, but join the disabled population.

And medical care itself becomes ever more expensive, as new drugs, new equipment and new procedures are developed - not to mention the costs of some of the people above needing time in hospital, in intensive care wards, in rehabilitation centres and so on. All money well spent, of course. But it's money that a few decades ago wasn't spent at all.

While of course governments may change policies and spending priorities in the face of fiscal realities (hard stare at ConDem coalition government), free personal care has been such a tenet of the SNP's faith that it's hard to see how they could drop it and retain any credibility at all (hard stare at Dem bit of coalition).

So what does the future hold for me in the land of the mountain and the flood? Well, I'll be getting free prescriptions and free personal care - at least at first. But I might well be paying more in taxes for the privilege.

My heart longs for an independent Scotland. My head says...weel, ah'm no juist sure!

Edit: Goldfish alerted me to this excellent post about free personal care: what is included and what is not. It shows eloquently that a large proportion of care needs are not included under the current definition.

On accessibility and the Big Society

Those of us who are unable to work due to disability or illness are in the middle of a change from Incapacity Benefit (IB) to Employment and Supprt Allowance (ESA). Under the old IB test, one thing considered was whether you could walk, and if so, how far. The ESA test replaces this with the activity of "mobilising" with or without a walking stick, manual wheelchair, or other aid.

So, it seems, the Government is assuming that the environment is now so accessible, and technology so advanced, that mobilising using a manual wheelchair is no different from walking. But is this really the case? And even if it is, are currently able-bodied people getting in the way of disabled people using it?

Being part of the mainstream isn't so easy when a major music venue (*cough* Brixton Academy *cough*) has this as its idea of accessibility..

And to be frank, inside wasn't a whole lot better.

At least they'd made the attempt though. All that's required is that service providers make "reasonable adjustments". What is "reasonable" depends (among other things) on the cost of the adjustment and the size and resources of the organisation. The small pharmacy I use has a step at the entrance, and it would be difficult to have a ramp: so they've installed a doorbell at the door, meaning that I and others who can't get in can summon someone to help us. Clearly it's not ideal transacting my pharmacy business on the pavement, but I think in view of the size of the business and the costs of installing a ramp, the adjustment they've made is reasonable.

And what of the Big Society? Insofar as anyone can work out what the phrase means, part of it seems to involve people taking an active role in their communities. Even if people don't want to get involved in voluntary work, you would think that the bare minimum would be having a tiny bit of consideration to make sure that others are able to move around.

Apparently not.

I have a marked disabled bay outside my house - not a blue badge bay, just a bay marked in white paint with the universal disability sign. Because it's not a blue badge bay, it's not legally enforceable. It's a kind of "look guys, there's someone disabled living here, so howsabout leaving the space free, yeah?" bay. It depends on people's goodwill and consideration for others.

Except that those seem to be qualities in short supply. Few of the houses in my street have off-street parking, and even among those that do, many have more than one car. So parking spaces are in high demand. If I happen to be out (It does happen. Occasionally) I can guarantee that the space will be filled when I get back.

My car is modified to be wheelchair accessible. It's great - totally designed round my needs, completely accessible. I get into it up a ramp at the back, and have a large sticker in the back window saying "Wheelchair access needed - please leave at least 3 metres space". Yeah, you can guess what happens. Parked right up to the bumper.

Then there's drop kerbs. The other day, I made it out as far as my local shop. Came out, up the hill to the junction. But someone had parked across the dropped kerb...so back downhill, right to the shop again, down the drop kerb there, back up the hill in the road, and finally across the junction. Now fortunately I was using my power wheelchair so going three times the distance someone walking would have to was no extra effort. But an environment so accessible that using a chair is no different from walking? Uh...no, I don't think so.

You know when you read in the paper about some elderly person being picked up by the police driving their mobility scooter down the hard shoulder of the motorway? Well, I don't reckon they have confusion at all. I think they're just trying to find a drop kerb that mobody's parked across.

MS research roundup May 2011

Yet again, there's been lots of interesting research published this month. Some of it is quite technical, but I'll do my best to translate it into English - depends on me working out what it means myself though!

I've written in previous posts about the link between lack of exposure to sunlight and  getting MS. It's also been known for a while that people with antibodies to Epstein-Barr virus, which causes glandular fever (mononucleosis), are more likely to get MS than people without. British researchers looked at the two together, to see if their data could help explain the variance of the disease across the UK. They found that adding the effects of Epstein-Barr and exposure to sunlight together explained more of the differences than exposure to sunlight alone. They suspect that exposure to Epstein-Barr may lead to an abnormal response to vitamin D deficiency.

Still on Epstein-Barr virus: a British research team has been investigating the mechanism which causes the virus to increase MS risk. They were looking at epigenetic changes in DNA. Epigenetic changes are non-genetic changes leading to the genes behaving (expressing themselves) differently. These effects can last for several generation. There is now convincing evidence for an epigenetic component to MS. Effects have been found for mother and child, grandparent and child, and early life (birth month). This study found many locations on the genome different before and after infection with Epstein-Barr.

I've also previously mentioned that people with one autoimmune condition seem more likely to have another, and various pieces of research are being done to confirm this with people with MS. Spanish researchers investigated people with MS to see whether coeliac disease was more common in them than in the general population. Coeliac disease is an autoimmune disease of the small intestine, caused by a reaction to proteins in wheat, barley and rye. Worldwide, about 1-2% of the general population have coeliac disease. This study found that 11% of people with MS had coeliac disease, and a very high prevalence of 32% among their first degree relatives.

This gives me a chance to air one of my pet theories, backed by nothing at all that I'm aware of except personal anecdotes. If you ask people with MS, you'll find an awful lot of them have autoimmune conditions in their immediate family - lupus, rheumatoid arthritis, type 1 (juvenile onset) diabetes, and so on. My dad had Parkinson's disease, which is also autoimmune. I suspect that we may inherit a tendency to get autoimmune conditions, and what particular one or ones we get is then down to viruses, environmental factors and so on. Are any research teams reading this...?

Two different research teams, one in the USA and one in Switzerland, have found that an immune system molecule called GM-CSF plays a central role in the inflammation of the central nervous system that occurs in conditions like MS. The research was in animals bred to have a condition that mimics MS. If some way can be found of blocking GM-CSF activity, this would be a possible treatment for MS.

Previous studies have shown that white blood cells called leukocytes enter the central nervous system and play a major part in causing the damage contributing to MS symptoms. Other studies have shown that molecules called MMPs help the leukocytes enter the CNS. Now Canadian researchers have found that a molecular switch called EMMPRIN plays an important part in this process. They found that inhibiting the production of EMMPRIN reduced MS-like symptoms in mice. They also found that EMMPRIN is significantly raised in brain lesions in MS patients. EMMPRIN is another new possible target for MS treatments.

One of the major concerns with MS, and other conditions like it, is uncertainty: not knowing how far, and how fast, disability will progress. Now researchers from the Mayo Clinic in the USA have discovered what they say is a way of predicting how disability will progress in people with secondary progressive MS (SPMS). They found that people with SPMS and a faster disability rate had higher levels of an immune system molecule called immunoglobulin G in their cerebrospinal fluid. They concluded that if someone with SPMS has a higher level of IgG, it is likely that they will have a faster rate of disability.

But do we want to know? Of course, it would be lovely to know we're going to have a slow rate of progression. But there's the risk of learning the opposite...not sure it's a test I would want.

And before moving on to medical treatments, one natural therapy that's sadly not open to all of us. It's already known that women tend to have remissions in pregnancy and relapses following childbirth. German researchers have now found that the (possibly hormonal) protection of pregnancy is extended if the baby is exclusively breastfed. However, breastfeeding can't be combined with disease-modifying therapies, so previously the mother had to decide without clear evidence to support their choice. More research is needed, though.

So, on to medical treatments. First, some news about an existing treatment, interferon-beta, from a research group in Spain. HHV-6 is a form of the human herpes virus, and is present in a high proportion of the human population. It causes the childhood fever known as exanthem subitum or roseola infantum. Although it then remains in the body for life, it is symptom-free. These researchers found that people with antibodies to HHV-6 in their blood had more relapses and responded less well to interferon-beta than those without.

There has been a lot of media coverage over the UK approval of Gilenya (fingolimod), the first oral disease modifying treatment for MS. This is only one of the many possible links. The media (perhaps understandably, given their general audience) didn't give much stress though to the conditions under which it will be given. I think they're important. Gilenya is for people with aggressive relapsing remitting MS (RRMS), and will only be prescribed when the standard therapies have failed. This is because of possible serious side effects, including reduced heart rate and eye problems. So for most people with RRMS, I'm afraid it's injections as before!

Now onto newer disease modifiers, still in the research stage. Laquinimod is another oral treatment, and has just completed a large phase 3 clinical trial with over 1100 patients in 26 countries. The Italian researchers found that those on laquinimod had 23% fewer relapses, 36% less disability progression, and 33% less brain atrophy than those on a placebo. It seems to be well tolerated and have a good safety rate. A promising treatment, but a pity from a personal viewpoint that yet again it's for people with RRMS!

Another phase 3 clinical trial reporting recently investigated the use of an oral drug called BG-12 (dimethyl fumarate) in more that 1200 people with RRMS. Study participants who were taking BG-12 were significantly less likely to have had a relapse after 2 years than those on a placebo. There was also a significant reduction in the annual relapse rate, the number of new or enlarging brain lesions, and the rate of disability progression. Unfortunately, BG-12 has to be taken 2 or 3 times a day, which could reduce compliance. If a sustained release version can be developed, this could be a really useful treatment for people with RRMS.

Olesoxime is a proposed new treatment for spinal muscular atrophy (SMA), a genetic disease characterised by progressive degeneration of muscle neurones. As MS attacks the same part of the neurone as does SMA, French researchers have been investigating whether olesoxime could also be beneficial in MS. They suspect that while acute relapses are caused by inflammation of the CNS, progression is caused by degeneration. The research has not yet reached human volunteers, but looks promising.

Finally, reports on research into treatment of two symptoms of MS. Ampyra (dalfampridine) is a drug designed to help with mobility problems. It has been approved in the USA and various other countries, but not yet in the UK due to concerns over side effects. Detailed analyses of all the Ampyra trials that have taken place show that there is increased risk of seizures, and also of urinary tract infections - always a concern for people with MS, particularly those on disease modifiers which depress the immune system.

Finally for this month, a phase 2 clinical trial is beginning on a new drug for neuropathic pain. It's hard to believe that it was as recently as the 1980s when MS pain was acknowledged. Those of us with chronic neuropathic pain know how severe and debilitating it can be, and how badly it can affect quality of life. The trial for the new drug, AVP-923, will measure levels of pain, fatigue, sleep quality and cognition. Sounds very interesting - I look forward to seeing the results!

That's it for May. Another long post I'm afraid, but they will keep doing this interesting research!

Gleeless #badd2011

This post is part of Blogging Against Disablism Day 2011, being run by Goldfish over at Diary of a Goldfish. Check it out for many superb posts on the general topic of disability and disablism

I confessed in a previous post to being a hardened and unashamed Gleek - addicted to the TV show Glee. I love its mixture of music, corny humour, and a huge dollop of cheese on top. One thing that's concerned me, though, is the programme's portrayal of disability.

Three stereotypes of disability are often used to typify people with impairments in mainstream media:

• The disabled person who wants to be "normal"
• The disabled person as pitiful, innocent and good
• The disabled person as evil

There are three obviously disabled characters in Glee. I'll consider them separately, as I believe that each represents a different one of these stereotypes.

Artie Abrams, played by the able-bodied Kevin Hale, uses a wheelchair following a car accident when he was 8. He dreams of some day walking again: at one point he tries (and fails) to stand using crutches, and his girlfriend at the time, Tina, researches spinal cord injury treatments for him. In the current season he tries out for the school football team. In a daydream, he dances upright again.

Artie typifies the "disabled person longing to be normal".

The other two obviously disabled characters in the show both appear to have Down's Syndrome.

The first is Jean Sylvester, sister of the evil cheerleading coach Sue Sylvester. She is played by Robin Trocki, and appears in the show only occasionally. Although Sue is the "baddie" in the programme, she does occasionally show acts of kindness, often flagged up none too subtly with a visit to Jean in her Assisted Living home immediately before or afterwards. Jean's unquestioning love for Sue seems to act as her conscience, to make her act in a way that is otherwise out of character for her.

Jean typifies the "disabled person as pitiful, innocent and good"

The last of the obviously disabled characters, also linked with Sue Sylvester, is Becky Jackson, played by Lauren Potter. Sue accepts Becky into the cheerleading squad, the strong implication being that this is because Sue's sister also has Down's Syndrome. However she rapidly becomes Sue's understudy and "mini-me", helping her in her devious plots, sitting in judgement in cheerleader auditions, and so on.

Becky typifies the "disabled person as evil"

Really, the only one we're missing is "disabled person as brave" and we'd have the complete set. Actually, thinking about it, in season 1 an episode called Laryngitis featured Sean, an American football player who'd become paralysed from the upper chest down in a game. And yes, he'd learned to deal with it, a person is not just one thing, the whole nine yards. So we have our complete set.

Probably the most controversy has been caused by Kevin McHale's portrayal of Artie: why is an able-bodied person playing the role of a wheelchair user? Studio bosses claim that they auditioned both able-bodied and disabled actors, but it was difficult to find anyone who could really act, really sing, and had the level of charisma required. But y'know...why were they auditioning able-bodied actors for the part of a disabled kid in the first place?

Glee still hasn't worked out how to show disability properly. Really good depictions of disability involve characters who just happen to be disabled, not characters whose every storyline centres around their disability. Let's hope they finally take some advice from the many disability organisations who are trying to show them the way.