Do the right thing

I have thought about writing this post for a long time now but coming across a tweet by Sophie Morgan on Twitter, in January 2019,  has  finally got me around to writing it, in the hope that I can raise some awareness and understanding.

Accessibility is a topic I feel passionately about. 20 years ago I was diagnosed, along with my father, with a neuromuscular condition called centronuclear myopathy. The condition is slowly progressive and 20 years on, I can still stand and walk and manage stairs (albeit in my own sweet way) however for 20 years the disease has been slowly chipping away at my ability to do things.

There are days when my legs feel like lead, I am constantly tired, I experience severe back pain when I stand for any length of time without support and stairs are really not my friend. Standing at the bottom of a flight of stairs, feels like standing at the foot of a very large mountain. A stair rail (combined with a lot of will power) means currently I am able to put my weight through my arms, rather than through my legs when I ascend but even so, sometimes I simply lose momentum, getting stranded midway and land up dragging myself up the remaining steps. At home, I could get a second hand rail or a stair lift but I am conscious when out and about, these are not things I would have access too and I am scared that I will come to rely on them and make matters worse for myself.

So, being ambulatory, I have questioned for a long time whether I should should write about building accessibility, after all, I do not use a wheelchair but inaccessible buildings affect me hugely and I know from first hand experience that ramps, stair rails, lifts and escalators can be the difference between me being independent or not.

When I talk about building accessibility, first and foremost,  I am referring to whether someone in a wheelchair or with a level of impaired mobility, is able to access a  public building, whether that be a shop, office, restaurant or entertainment venue, because that is how I experience accessibility or the lack of it. However, there are a wide variety of disabilities that must be considered when addressing access for all, including sensory impairments (e.g. visual and/or hearing), mental illnesses (e.g depression, stress, anxiety, phobias, bipolar disorder, schizophrenia), learning disabilities (e.g. autistic impairments, dyslexia, down syndrome), mobility and dexterity impairments, communication impairments, physical coordination impairments and memory/concentration impairments. There is not a one size fits all accessibility solution.

In order for me to access a building that is situated either up or down stairs, I only need there to be a stair rail but for someone in a wheelchair, steps are a total barrier. For the building to be accessible to us both, I would expect there to be a ramp, or a working lift. The word ‘working’ is key, because having a working lift going up but a broken lift or no lift going down doesn’t count and if like me, you are able to use an escalator, the same goes for these too – it is only common sense that if someone needs to use an escalator to go up, then they will need an escalator to go down too. I would expect this help to be found at the main entrance too, not out of sight, so the  building has to be accessed in some obscure manner.  Having a lift or the ‘accessible entrance’ hidden away at the back of a store doesn’t count either.

The law states that buildings should be accessible. The Equality Act, which was passed in 2010, is structured around nine ‘protected characteristics’, one of which is disability, and it prohibits discrimination, harassment and victimisation against all those who fall within these groups. The Act defines a disabled person as ‘Someone who has a physical or mental impairment which has a substantial and long term adverse effect on their ability to carry out normal day to day activities.’

Whilst the accessible design of buildings is regulated by Building Regulations law, The Equality Act requires ‘reasonable adjustments’ to be made when providing access to goods, facilities, services and premises.  (Ref: Designing Buildings)

Reasonable adjustments might include changing a physical feature of a building,  providing an extra aid or service, or widening aisles so a wheelchair can get through. (Ref: Citizens Advice Bureau)  Reasonable adjustments, in my opinion, are not having a member of staff bring products out of the shop for a customer to view, nor does it mean a member of staff shopping for the customer or that the customer is manhandled on and off the premises … and doing absolutely nothing at all, is absolutely not a reasonable adjustment either. Making a building accessible, means that as far as is reasonably possible, the ‘disabled’ customer has the same experience as any other customer, allowing them to retain their dignity and independence.

Let me give you some examples of situations I have experienced. On picking up a prescription for my dad from the local chemist one time, I was asked by the woman behind the counter how my dad was. I explained that he was sat outside because he was no longer able to manage the large step and the heavy door. ‘Awww’ came the response.  My dad did not need sympathy, what he needed was for the owner of the property to stop breaking the law and make reasonable adjustments to their property, so that my dad could retain his independence and continue getting his own prescriptions for as long as possible.

My home is the city of Chester – built by the Romans, the city boasts the most complete city walls, Tudor style buildings, the oldest racecourse, the largest Roman Amphitheatre in Britain, a one thousand year old Cathedral and the Rows galleries, 700 year old two tiered shopping galleries, providing two high streets in one, meaning their are many steps. The city is charming but while it is possible to cite examples of accessible practice, it most certainly is not accessible (the chemist referred to above it should be noted is not situated in the old part of the city) and I feel for those who are tasked with making it so but worry that the owners of buildings in the city, think because of its heritage, they do not even have to try to make reasonable adjustments. For example, how difficult would it be to extend an existing handrail on steps leading down into a major department store, so it is alongside the first step, or to place a hand rail on the steps at the entrance leading up into a women’s clothing chain store.

Recently a new sandwich shop opened in the city. As a new business at street level which opened in 2018, I would have expected the building to be accessible. I thought I would pop in for a sandwich but on getting to the door, I found there were a number of steps that led down into the shop and no handrail. I stood outside looking in but didn’t trust my legs to support me down the steps, so I walked away. The shop lost my trade and possibly a regular customer.

Again, in Chester, a hairdresser I had been going to had a large number of steps to be navigated. Steps led up into the building from street level but in the time I went to the hairdresser, the hand rail was never screwed tightly to the wall and shook as I held onto it, so I never felt safe. Once inside the building, it was necessary to navigate a grand staircase with a wide wooden bannister on one side which I struggled to get my hand around and a dado rail on the other – stairs led to a half landing and then there were further stairs. I persevered for some time, not wanting to choose my hairdresser on the basis of whether or not there were stairs to negotiate but eventually I gave up.

I attended a building on the opposite site of the road for a job interview and phoned ahead, advising I had mobility issues and that a stair rail was crucial if I needed to go up and down stairs. Oh yes, I was told, there was a handrail on either side of the staircase but on getting to the interview, I was confronted again with a wide wooden bannister and a dado rail. Dado rails really don’t count as stair rails but are better than no rail at all I suppose, which was the experience I encountered at a recruitment agency in the city, where I struggled up and down the steep staircase trying to hold onto the wall, while the recruiter watched.

Concert, cinema  and theatre venues can be a nightmare too. And whilst I have sympathy with old theatres, there really isn’t any excuse for the stairs it is necessary to navigate at modern concert venues in our big cities, which are quite terrifying. Credit where credit is due, the Storyhouse theatre in Chester, situated in an art decco building dating back to 1936, is a very good example of what can be achieved, The recently refurbished Vue cinema in Ellesmere Port nearly left me speechless (although it still needs work for disabled users who might not want to sit right up next tot the screen) and the O2 in London was an excellent experience too – here I was whisked away to my seat, meaning I didn’t have to queue, by a member of staff who didn’t make me feel in the least uncomfortable or like I was being a nuisance.  However, having to trek half way around a concert venue to get to your seat or being told at the end of the show that you have to wait for everyone else to leave before you can, was not a good experience.

My worst experience was at an arena in Liverpool. On arriving, I advised that I would prefer not to use the stairs to my seat.  I presented at the arena as an ambulatory person with a walking stick and with the Equality Act having been in force since 2010, expected to be advised there was a lift. The woman I spoke with asked for help from a man and I also advised him that, I was trying to get to my seat without using the stairs. Absolutely, he said, there was help available and I would only need to use a couple of steps. Fabulous I thought … and then the situation snowballed. Firstly, the man called for First Aid (sadly my condition cannot be cured with first aid). Then he requested a wheelchair for me (my worst nightmare – I am living with a progressive muscle condition and fighting every day to stay out of a wheelchair). “‘Oh no” I said, “I don’t need a wheelchair”. “It’s too late” came the dismissive response, “it’s on its way now, don’t move from that spot”. At that point, if I could have done a runner, I would have done so but the wheelchair and two first aiders turned up. Once again I advised I don’t need a wheelchair. “It’s okay” came the chirpy reply but for me, it was anything but okay and in order not to cause a scene, I seated myself in the wheelchair and allowed myself to be pushed half way around the arena, telling myself that the ordeal would be over in a few minutes and that I would be delivered within a couple of steps of my seat.

And then we arrived at our ‘accessible drop off point’ … the top of the large flight of stairs I had specifically said I did not want to deal with, so not only had I been pushed around the arena in a wheelchair, something that I absolutely did not want, I still had to manage the stairs. “This is the nearest we can get you”, I was advised. At this point my mum asked about the lift to the ground floor. She was advised, there was no lift to the ground floor and knowing that I would not want a fuss, she let it go. Subsequently, I had to manage the entire staircase from top to bottom (worrying each time I reached a break in the handrail that I was going to fall), with one of the first aiders walking backwards down the stairs in front of me. Interestingly, having created such a drama getting me to my seat, none of the people involved, asked if I needed help getting back up the stairs. I was left to struggle back up those on my own, dragging myself up each step using the hand rail, feeling as if I was making a complete show of myself.

I later complained to the arena  and was advised “The venue has multiple areas where there is lift access, and the stewards are all aware of these locations. On Tuesday evening, our team could have directed you to the lifts to gain easier access to your seat, and so I can only conclude that the staff who were trying to assist you failed to consider this as an option.”

Writing from a personal experience, since the Equality Act came into force, I have seen  little in the way of change and that makes me very sad, but why would a business go the the expense of making costly changes if the law  does not get enforced and businesses are not fined? Businesses have had since 2010 to make changes and have not done so. If real change is to take place and the law is to be more than just lip service, this needs to change.

For the record, when you get diagnosed with a medical condition that leaves you with legs that can sometimes be a little wobbly and unreliable or altogether no use whatsoever, you don’t suddenly stop enjoying doing all the things you have enjoyed up to that point. If you enjoyed shopping, eating out, going to concerts, theatre and the cinema and getting your hair done prior to your diagnosis,  you still going to want to do those things after it. Why should you not be able too? And even if the law did not state that buildings should be accessible, isn’t it simply the right thing to do?

Further reading

The above is very much a personal perspective and only scratches the surface of the accessibility issue.  Further selected related reading can be found below.  If you have this far, please take the time to learn more and help spread the word.

Spaceathlon: a fundraising challenge

During May my dad and I will be taking part in a Spaceathlon Challenge to raise funds for the Neuromuscular Centre (NMC) in Cheshire, where we both attend for physiotherapy treatment. The NMC is a national Centre of Excellence for adults with muscular dystrophy, providing ongoing, specialist physiotherapy, employment and training, advice and support to 1,000 individuals (and their friends, families, and carers) affected by neuromuscular conditions. The centre is also a charity, but its services are free for its service users, many of whom travel from across the country and further afield to access the knowledge and expertise available.

Neuromuscular conditions affect over 70,000 individuals in the UK and range in severity, onset and presentation. Some conditions are diagnosed at birth, while others do not become apparent until later in life, as was the case with dad and me. However, all conditions present challenges and affect independence, mobility and quality of life and all share one unifying feature, muscle weakness, which is often progressive and can lead to changes in the ability to walk, climb stairs, washing and dressing. Individuals affected by neuromuscular conditions are often less mobile, less able to access active exercise and therefore more at risk of secondary health problems in the future.

You can learn more about the NMC and neuromuscular conditions in the short film below – hit the triangle in the middle of the screen and it plays like magic.

Toni and Mike

Dad and I began attending the NMC shortly after getting our diagnosis of centronuclear myopathy and are incredibly fortunate that it is almost on our doorstep. Finding the NMC was a godsend, for on getting our diagnosis, we were told there were very few others in the world with the illness, that there was no treatment and that no long term prognosis could be provided. In addition no counselling was given to help us come to terms with what our futures held and to enable us to deal with our diagnosis emotionally.

For a while previously, I had attended a physiotherapy clinic at my local hospital – the physio who was not trained to understand muscle diseases would spend considerable time twisting and moulding my body and placing my feet and arms in a particular way, only for me to immediately ‘flop’ the moment she left me to stand alone because my muscles are simply not strong enough and therefore totally resisted this regularly prescribed type of physio treatment. Attending for physio at the NMC however is a different matter entirely. My treatment is designed for me and rather than trying to make my body work normally or trying to cure me, the focus is on maintaining the movement and flexibility that I currently have for as long as possible. My physios understand muscle disease and always take the time to ask about recurring problems or whether there are any new issues since my last visit and are able to offer a number of ‘on site’ solutions for regular or one off aches and pains, such as an infra red heat lamp, ultrasound and ‘wellies’ which help with circulation problems.

Attending the centre has also connected my father and I to others with muscle diseases and although they have different conditions to us (there are 60 to 70 types of MD), they understand what we are going through, as we all experience similar physical problems. The NMC also provides other types of support, for instance they were able to advise me on an Access to Work scheme and provide me with a letter of support to give to my employer and I know that should I require any other assistance in the future, they would be there for me.

Without the NMC my father and I would still be living with the knowledge that we have a chronic health condition but feeling very isolated and not knowing where to turn for help and support and although we are both aware that our condition is progressing and that there is no cure for us, attending the NMC has enabled us to re-gain some control in the battle against our disease. We are grateful to have found a sort of home inside the walls of the NMC and taking part in the Spaceathlon, is an opportunity for dad and I to give something back by taking part in a fundraising activity for the centre. Also to raise awareness of the work of the centre and the benefits of exercise for people with muscle conditions, as well as improving our own fitness.

The challenge

Inspired by British Astronaut Tim Peake, the effects of zero gravity during space flights which cause astronauts to experience loss of muscle tissue and bone density and the Space to Earth Challenge set by Tim to get fit with him, the aim of the Spaceathlon is simple, to encourage the whole NMC community to contribute to a cumulative distance of 460km (the maximum distance between the earth and the ISS) by taking part in physical activities and to raise funds for the centre in the process.

Research indicates that exercise (at an appropriate intensity and frequency) is beneficial for individuals with muscle conditions, not only in providing a stimulus to maintain muscle strength but also improving whole body fitness and reducing soft tissue tightness and pain. So the NMC has asked their clients to think about their own levels of activity and to set themselves a challenge. This could take the form of a specific time or distance or simply doing a little more active exercise than usual (as is the case with dad and I), with some clients aiming to cover a half marathon distance on the centres bespoke, wheelchair accessible arm and leg pedals, swimming the length of the ISS in the hydrotherapy pool or rowing to the stratosphere. While some are incorporating three elements to their Spaceathlon challenge, linking it with the triathlon theme.

The science bit

So how does Tim Peake and the Space to Earth Challenge relate to neuromuscular conditions? The progressive nature of muscle conditions is similar to observations made of astronauts in space. After five months in orbit above the earth an astronaut would typically lose as much as 40% of muscle and 12% of bone mass. Therefore astronauts have to undergo daily rigorous exercise to try to help counteract the loss of bone and muscle fibre, together with other risks such as shrinking legs due to fluid redistribution, deterioration of weight baring bonus and muscles and forgetting how to walk, that come with living in microgravity. And just like like an astronaut, if people with neuromuscular conditions don’t exercise, their muscles will waste away faster still, so some physical activity, despite what people might think, is really important. It is not at all easy but helps with cardiorespiratory fitness, energy efficiency, weight management and muscle performance – exercising muscles maintains flexibility, length and strength and helps maintain better function for longer.

Similar to a thermostat that only maintains a temperature when it is needed, bodies only maintain or build muscle when muscles are used repeatly. This is why body builders are able to gain muscle bulk by repeated weight lifting and also the reason why astronauts need to do so much exercise when in space – where the lack of gravity reduces the stimulation the body would normally receive from physical activity, taking away muscle tissue and bone it believes to be unnecessary. This mechanism is reproduced in neuromuscular conditions, where reduced activity and reliance upon powered mobility aids such as wheelchairs, leads to a reduction in muscle mass.

And finally

The NMC is a charity and 60% of the running costs of the centre come from fundraising, so if you are able to spare even a couple of pounds, dad and I would be incredibly grateful. Visit our JustGiving page below to make a donation – it will inspire us to walk and pedal even harder and enable us to give something back, to the place that helps keep us  and so many others with muscular dystrophy going.  And for progress reports on how we are getting on, keep checking the page – we will update this as we go along.

Further information