Disability Today Articles
Written by Eastbourne Access Group members and guests
as published in Eastbourne Herald
Living with MND By Mick D
In 2010, I was diagnosed with a Motor Neuron condition called Kennedys Disease, an illness that causes slow progressive weakening and wasting of muscles, for which there is currently no known cure. I have discovered that the challenges of living with Motor Neuron Disease (MND) can feel overwhelming. Knowing that in a relatively short space of time I will have to live with a mentally alert brain that will become trapped within a failing body, causes me considerable anxiety and stress which leads to bouts of depression.
As time has progressed, my ability to walk has increasingly become impaired. Not only do I have to manage the problems of getting around, but the disease also has an impact on my ability to communicate and to eat and drink as I have developed swallowing difficulties, which at times causes me to choke. I have had to adjust my diet, eating foods that I can easily manage. This situation has caused me to be reluctant to use cafes and restaurants as I do not wish the possibility of my symptoms becoming apparent to other customers and causing embarrassment.
I began to realise that the public’s perception of me when walking out and about in town, was at best that I was unsteady on my feet and at worst that I was intoxicated. Out of pure vanity, I refused to use a walking stick until my sixtieth birthday and then a few months later progressed to two sticks on the advice of my neurophysiotherapist. As my ability to walk any distance declined fairly swiftly, opportunities to enjoy the outside world were becoming restricted.
It was during April this year that I took delivery of a powered wheelchair, which I immediately found to be a very liberating piece of equipment. I have used the chair throughout the summer months to explore Eastbourne and beyond. Two or three times a week I venture along the seafront as far west as Hollywell and east to Sovereign Harbour. These routes are well served for the disabled with flat well maintained pathways and assessable RADAR toilet facilities. However, I was left feeling somewhat embarrassed as a resident on the late summer Bank Holiday Monday. I offered my assistance to a lady wheelchair user who was visiting the town and who was having difficulty accessing the disabled toilets on the Middle Prom on the west side of the Bandstand. Although she was in possession of a RADAR key, she could not get it to work. I used my key and found that although the RADAR lock was functioning, a second door lock was preventing access. I was unable to find any members of the Seafront Team to assist. The lady visitor may well have qualified to use the newly installed Changing Place toilet facility situated to the east of the Bandstand. However, as she was unaware of the facility prior to arriving in the town, she was not registered to use it.
[NB. the Changing Places facility is not an additional accessible toilet. It is specifically designed for disabled people, requiring additional assistance from a carer or carers when using the facility. With ceiling tracking and hoist, height adjustable adult size changing plinth. http://www.eastbourne.gov.uk/residents/leisure-and-events/eastbourne-seafront/changing-places
We all know about disability – or do we? There can be obvious signs and I have written about disabilities that cannot be seen but what is it like to be disabled? A huge topic I can only scratch the surface of from personal experience and those of friends and acquaintances. Disability is not a lifestyle choice. It can be forced upon anyone by congenital irregularity, accident or disease. Whatever the reason we have one thing in common and that is quite simply – we have to live with it. People with a disability are mostly able to make their own decisions and have their own opinions so why is there still so much inequality in everyday life with decisions made by others without consultation, understanding or even knowledge of a disabled individual’s situation? Disabled people who can work and who want to work face myriad barriers. They have fewer opportunities to develop skills and experience, face practical obstacles, such as inaccessible transport, and often experience negative attitudes from employers. Data from 2014/15 shows that 30% of working-age adults in families where at least one member is disabled were living in households with below 60% of average income compared with 18% for those living in families with no disabled members but being disabled has a greater effect on family budgets too regardless of income. There are hidden costs of being disabled often unrecognised by their non-disabled peers. From expensive equipment to higher energy bills, disabled people and their families pay over the odds for essentials. These costs add up to an average of £550 a month. This compares with average welfare payments of £360 per month – leaving a substantial gap that disabled people have to finance. The natures of the extra costs of disability vary enormously across different conditions and from individual to individual. Examples include the costs of specialist equipment, such as wheelchairs, additional clothing, higher transport costs and higher energy bills, due to increased needs for heating caused by immobility. Winter fuel allowance is not available to disabled people below state pension age. Whereas it is true that some concessions are available to disabled people they often focus on an accompanying carer one example being a cinema ticket for a partially sighted or blind person. The person with disability pays full price, the carer goes free. Without a carer full price is paid even though enjoyment of the movie is severely limited and before raising questions why shouldn’t a person with impaired vision visit a cinema or a hearing impaired person attend the theatre? There has been much media coverage of perceived ‘benefit scroungers’ such that many genuine recipients of welfare are being closely observed and disrespected through ignorance of their circumstances. Contract hire ‘Motability’ cars are being taken away from people with impaired mobility if they are deemed to be capable of walking a mere 20 metres, the length of a bus! Buses cannot offer door-to-door service so an expensive taxi is often the only alternative for essential travel so before viewing disabled people receiving welfare as scroungers, consider what impact these additional costs would have on your lifestyle.
Written by Ian Westgate
Last autumn I wrote about the hazards of autumn as experienced by disabled people and many others with age-related impairment. As we hurtle through summer towards another autumn we are confronted with the same issues. Rather than wait until the traditional tidy up session that all gardeners undertake can I ask through this column that pro-active action be taken before overhanging trees and shrubs become a problem to passersby. My focus was returned to this message recently when a short journey in my wheelchair left me bleeding from a lacerated hand and arm. I was using my power chair on a narrow pavement with no drop kerbs when I encountered a huge growth of foliage protruding onto the pathway. The restricted width meant I couldn’t avoid the obstruction without toppling into the road so I proceeded carefully. My wheelchair control is on the right and I had no option but to allow the leaves and branches to drag across my arm as I moved forwards. Unbeknown to me there was a mature bramble hidden within the leaves which duly punctured my skin as it dragged painfully up my arm. Fortunately the bleeding stopped quite quickly but for a haemophiliac or person taking a blood thinning medication like Warfarn the consequence could have been much more dramatic. A partially sighted or blind person could have experienced a facial wound. Children and babies in buggies are also vulnerable. Vegetation which overhangs roads can also cause a danger to motorists, especially to drivers of high-sided vehicles such as lorries or buses.
In 2015 the County Council started a CUT IT BACK campaign encouraging people to take positive action to avoid upset, distress or possible injury to others. They urged Landowners responsible for hedges and trees which overhang the road or pavement check regularly and if necessary cut it back. They reminded us that maintenance of trees and hedges growing on private land are the responsibility of the property or landowner. East Sussex County Council head of highways, said: “People who have property bordering the road or footway may not realise it’s their responsibility to ensure vegetation is not causing a danger or obstruction, or blocking off light from a street lamp. We would strongly encourage people to maintain their trees and hedges responsibly and to inspect them regularly during the growing season.” “People are advised to ensure the footway is clear of vegetation to a height of 8ft (2.5m) and the road is clear to a height of 17ft (5.1m) and 1.8ft (0.5m) from the edge of the road towards their property. If made aware of any problems caused by overhanging vegetation, the council’s highways team will write to the landowner asking them to cut it back. If no action is taken, the council may get its own staff to cut back the tree or hedge and bill the landowner”. More Information about cutting of hedges and trees is available online at; https://news.eastsussex.gov.uk/2016/12/12/cut-back-hedges-and-trees-and-protect-the-public/
Changing Places toilets help change lives
No one likes talking about toilets many of us avoiding the subject for fear of embarrassment but why? Everyone has need of a toilet and for some the need can be quite urgent. There is no statutory obligation for local authorities to provide public toilet facilities but many of us are grateful that Eastbourne does. We can also be glad that Eastbourne has embraced the modern thinking about Changing Places by not only having one in the Arndale Centre but a second very important seafront location has received planning permission and the facility will be in place later this summer. Changing Places toilets are not like standard disabled toilets – they are much more than that. They have a height-adjustable, adult-sized changing bench, a hoist and space either side for two carers. Without Changing Places toilets in public spaces, people who have severe disabilities have to choose between: going out for just a short while (so they can get back to use their own toilet), going out for longer but having to change on a dirty public toilet floor or not going out at all. Changing Places differ from other accessible toilets in that they have: adequate space for a disabled person when they are not in their wheelchair, their wheelchair and one or two carers, an adult sized, height adjustable changing bench, wall mounted or free standing, a ceiling tracking or a mobile hoist facility, a peninsular (centrally placed) toilet accessible from both all conforming to British Standards: BS8300:2009. This is certainly something townsfolk of Eastbourne should be proud of as it puts Eastbourne in the premier league of resorts when considering equality and inclusivity for all issues. Changing Places toilets are in addition to standard accessible toilets of which we have a few in the town but with an increasing and aging population together with an increasing visitor count I would urge proprietors of commercial premises to open their minds to offering their facilities to both customers and non-customers alike. I am not suggesting changing places but where premises have toilet facilities and in particular wheelchair accessible toilets they should consider making these available to anyone in need. Of course objections will be numerous and widely ranging but I ask everyone with premises that contain such facilities “How would you feel if you were in need of a toilet when in unfamiliar territory?” Perhaps if you were a visitor exploring a new town where public toilets are few, would you be happy to be refused a basic need? Show some compassion and understanding. By making your facilities available in such circumstances you may gain a new customer and remember that people are always ready to tell others of their experiences so to be seen as kind and considerate may result in an increased customer base with a consequential increase in business. Good news travels fast as do accounts of bad experiences so if such a request should come your way consider role reversal and imagine it were you doing the asking. The Eastbourne Community Toilet Scheme exists to facilitate the development of this idea.
Visit www.changing-places.org or email firstname.lastname@example.org for details
Strain of the train
Remembering the old slogan British Rail used “Let The Train Take The Strain”, it would appear that we have entered a time when the train actually causes the strain, at least as far as disabled passengers are concerned. Today I heard of repeated incidents where a wheelchair user was left helpless on an unmanned platform to watch as the train arrived and departed with no-one there to assist with ramps. The station was Hamden Park which is unmanned much of the day and the trains were driver only operated – an exceptional circumstance according to Southern but one that is becoming increasingly frequent. The Equality Act of 2010 specifically mentions ‘Duty of Care’ that service providers must offer service users. In other words if an individual buys or uses a service offered by a supplier then the supplier has a duty to ensure the transaction is honest, fair and safe. With that in mind it is a woeful neglect of duty for a public service like the railway to fail to accommodate a fare paying customer simply because the customer is disabled and requires assistance. Interestingly enough this us one element of the ongoing dispute between Southern and the Rail, Maritime and Transport Workers Union (RMT). I have in my possession a letter from the Department of Transport who actually control Southern Rail unlike other franchises, and in response to an enquiry by another disabled passenger wherein it states that Southern Rail is required by law to comply with Disabled Person’s Protection Policy which sets out the level of service and facilities available to disabled passengers and those with reduced mobility. The letter goes on; “We take accessibility extremely seriously and we expect our industry partners to fulfil their obligations”. With many of the stations in our region being unmanned, onboard supervisors (OBS) formerly called guards, are surely there in part to assist the disabled and vulnerable should their journey involve access to such stations. The driver cannot be expected to leave his cab to help with ramps etc. so what happens when an OBS is not present? The OBS is there for safety reasons and able to conduct safe evacuation of the train should the need arise but Southern’s exceptional circumstances are not clearly defined. One must assume it means when only one member of staff is available so it must also be assumed this will be an unannounced situation thereby depriving the mobility impaired passenger the right to travel. No-one other than a Southern employee has keys for or permission to use the official ramps to access the train, so where is the duty of care in these circumstances? The Equality Act of 2010 is known to be weak and it proves to be totally worthless for mobility impaired passengers on Southern, I fear there will be many more instances where wheelchair passengers look on forlornly as their chosen train leaves without them or worse if they are on board, find it impossible to get off as happened to me once, but that’s another story!
Riding in th WAV (wheelchair accessible vehicle)
For many people with a mobility impairing disability, using a wheelchair is often the only option. There are manually propelled wheelchairs for people with strong upper limbs or a willing helper to push and battery powered wheelchairs for greater independence. All very fine for pottering about the home and garden but even with electric chairs that offer easier travelling, visiting local shops and other nearby attractions can be quite arduous. With limited range even on level surfaces and travelling at 4mph, simply nipping down the shops can be very time consuming. Transferring to a carer’s car or a taxi as a passenger is an option but for a car owner who wants to drive – what do you do with the wheelchair once you’ve transferred? What do you do when your destination is reached? One answer could be a Wheelchair Accessible Vehicle or WAV. Available either through the Motability Scheme for higher rate mobility benefit recipients or available new or used from a number of manufacturers and specialist dealers these vehicles offer a mobility option worth considering. In their simplest form they are based on a commercial vehicle chassis with the load floor lowered and folding ramped access provided at the rear through an enlarged tailgate. In many instances rear seating is adapted to permit a wheelchair user to travel alongside the back seat passenger(s) but some retain their original seating and can still accommodate a wheelchair passenger. There are a multitude of adaptations that can be made to these vehicles suiting many diverse requirements users may have. Driving from a wheelchair is one option but the majority are built with wheelchair passengers in mind. I chose a Volkswagen Caddy Maxi that offers full seating for driver and four passengers plus a wheelchair passenger. Originally chosen with a view to me riding up front with my chair in the rear, it soon became the norm for me to travel in my wheelchair with ease of loading using the integral ramp being a major factor. The positives for this type of travel are easy to see but there are negatives the biggest being communication between driver and wheelchair passenger the difficulty being the level of road noise but there are other WAVs where the wheelchair is situated next to rear seat passengers further away from the tailgate and closer to the driver. These vehicles do not afford as much space as my Caddy but are arguably more comfortable over our increasingly potholed roads but it must be remembered that they are all commercial vehicles at heart and so employ stronger, less absorbent suspension. In summary WAVs are a way of getting out and about with or without your family as opposed to staying at home and not participating in everyday family life. With my electric wheelchair and WAV I am able to continue my passion for exploring stately homes, parks and gardens wherever they may be and it makes nipping to the shops just that, a nip rather than an expedition.
Written by Ian Westgate
Safer road crossing …
“In today’s age there are so many pressure groups each pressuring Government and councils for their own special needs and requirements. How about for once we all look at our town and simply say “we are all people” we all need to rub along together in harmony, there, it’s that simple. Or, is it? Eastbourne has a target of delivering a “quality environment”; most of us would assume that this applies to air quality and delivery of clean open spaces. What, however if we said that our urban environment is only any good if we can all access it freely without obstacles, hindrance or risk of injury (or perhaps even worse?). Within this environment do councils have a duty of care to ensure our walkways are retained as safe walkways? Are our crossings especially dropped kerbs well laid out, clearly marked and visible for all people to use in comfort and safety? Very few people would think that crossing a road is a problem or an issue. We can normally find a spot to cross or run across the road if required. What if you use a dropped kerb though? Many residents use dropped kerbs as a safe comfortable place to cross their local roads however there is a growing concern that many of these kerbs are so poorly laid out that they present a formidable danger to pedestrians in terms of potential injury or death. Dropped kerb sites are also of course essential for people that use wheelchairs, mobility scooters and other mobility aids. They are a preferred site for young children and parents to cross the roads. Yet astonishingly many of our dropped kerb sites in Eastbourne enable vehicles to be parked against the right hand side of the kerb. This practice robs pedestrians of their view to oncoming traffic (right hand side) completely. Pedestrians have to walk without full sight into the carriageway. Such a design also means drivers have little to no warning that pedestrians are entering the carriageway behind parked vehicles. This unsatisfactory situation is worsened when vehicles park across dropped kerbs thereby making safe road crossing impossible for mobility impaired pavement users but in defence of motorists it must be accepted that many dropped kerbs cannot easily be seen. Without the presence of coloured tactile paving from a vehicle a dropped kerb appears the same as a standard kerb. The difference in height is not immediately obvious and when the driver alights the vehicle the dropped kerb is on the passenger side and goes unseen. A simple and inexpensive option to assist both drivers and those crossing roads could be to paint a yellow line on the road immediately across the kerb and continuing about 1 metre to the side from which the traffic is approaching. Usually to the right as one stands facing the road but this idea would work equally well in one-way streets where traffic comes from the left. With £1m plus funding for walking and cycling just announced, set against the huge imbalance of funding EBC have provided to cycling surely some of this money could be spent ensuring dropped kerbs in Eastbourne are made safe for all residents, young or older that want to use them as a safe space to cross our busy road network.”
Written by Ray Blakebrough and Ian Westgate
Living with an Incurable Disease
To be diagnosed with an incurable disease doesn’t necessarily mean you have a life threatening or terminal condition. There are many illnesses that have no cure, from life limiting cancers to the common cold. The very word incurable can strike dread into the minds of many receiving such a diagnosis but it need not because with careful management and positivity of mind in many cases life can continue virtually unaffected. It is often the attitude of others that can have the most profound effect. My personal circumstances were quite ordinary 30 years ago. I had a full time career, house and family just like millions of others but I did have something extra, a diagnosis of Multiple Sclerosis. Initially, with no physical changes to my person I was stunned that the honest declaration of my ‘incurable’ should have such a dramatic effect on a thing like travel insurance and the like. Worse was to come though when a new manager made me redundant. Life was becoming a living hell, wholly unfair carrying label everywhere I went. It appeared I was being judged by what I had and not who I was and how I managed the symptoms. At that time even the Job Centre declared they couldn’t find a job because of my diagnosis so drawing a blank searching for a job myself and not wishing to deceive, I launched out in a new direction in the voluntary sector. Although financially difficult the redundancy package proved helpful in smoothing the transition from paid employment to voluntary work and I quickly began to realise why society needs volunteers. My MS was slowly worsening but I felt I still had something to offer and with support and encouragement from family and friends my confidence began to grow. I looked to the positives in my life, one of which is my stubbornness or determination as I like to call it. MS will not defeat me. It may affect my life necessitating adjustments large or small but with help I will overcome them if I can or learn to accommodate them if I cannot. I determined to manage my condition rather than be managed by it. It is often said “When one door closes another opens” and my opportunity came ten years ago when I was elected Chair of the Eastbourne Access Group, a community group of volunteers promoting Equality for All and helping to remove the barriers that disabled people encounter every day. I felt rejuvenated and began a personal mission to develop the Access Group from a re-active body reporting overhanging hedges and potholes in pavements to a proactive community group with a voice speaking on behalf of the estimated 10,000 people with impairment who live within the borough boundary. Ten years on I am delighted with progress and our Eastbourne Guide for Disabled People, website and Facebook page are becoming increasingly well received. There is more to do but my MS is slowing me down now. It has not defeated me but I recognise it is time to pass the baton. Are there any potential volunteers out there who share my passion? If so please get in touch at email@example.com or give me a call on 0781 0317 185.
Written by Ian Westgate
Generally seeing a person in a wheelchair, wearing a hearing aid, or carrying a white cane tells us a person may be disabled. But what about invisible disabilities that make daily living a bit more difficult for many people worldwide. Invisible Disability, or Hidden Disability, is an umbrella term that covers a whole spectrum of hidden disabilities or challenges that are primarily neurological in nature. People sometimes have difficulty understanding how symptoms such as extreme fatigue, dizziness, pain, and cognitive impairments can be so debilitating to anyone and can be met with hostility by society at large. Invisible disabilities can include chronic illnesses such as renal failure, diabetes, and sleep disorders if those diseases significantly impair normal activities of daily living. For example there are people with visual or auditory impairments who do not wear hearing aids or glasses so they may not seem to be obviously impaired. Those with joint conditions or problems who suffer chronic pain may not use any type of mobility aids on good days, or ever. Another example is Fibromyalgia which is now understood to be one of the most common causes of chronic musculoskeletal pain. Chronic pain can be experienced from a variety of conditions and some of these could be back problems, bone disease, physical injuries or any of other numerous reasons. Chronic pain may not be noticeable to people who do not understand the victim’s specific medical condition. Chronic Fatigue is a type of disability referring to an individual who constantly feels tired. This can be extremely debilitating and affect every aspect of a person’s everyday life. There are many mental illnesses that are regarded as disabilities; Examples including depression, attention deficit disorder, schizophrenia, agoraphobia, and many more. These diseases can also be completely debilitating to the victim, and can make performing everyday tasks extremely difficult, if not impossible.
Chronic Dizziness or vertigo, often associated with problems of the inner ear and can lead to impairment when walking, driving, working, sleeping, and other common tasks. Invisible disabilities can also include chronic illnesses such as renal failure, diabetes, and sleep disorders if those diseases significantly impair normal activities of daily living. If a medical condition does not impair normal activities, then it is not considered a disability. Approximately 96% of people with chronic medical conditions live with an illness that is invisible. Many people living with a hidden physical disability or mental challenge are still able to be active in their hobbies and work and also be active in sports. On the other hand, some struggle just to get through their day at work and some cannot work at all. People with some kinds of invisible disabilities, such as chronic pain or a sleep disorder, are often accused of faking or imagining their disabilities so please remember that just because a disability isn’t visible that doesn’t mean it’s not real.
Written by Ian Westgate
Spare a thought for the disabled this Christmas
The work of Eastbourne Disability Involvement Group EDIG
Pitfalls of autumn for people with disabilities
There Is Still a Long Way To Go
Eastbourne Designed For All
My Life with a hearing dog
Parkinson’s UK (Eastbourne)
The Importance of Public Conveniences
Scooters a solution to many a problem
Welbeing service helps with independent living
The Good neighbour scheme, Age Concern Eastbourne
Help finding the right scooter for your needs
The dos and don’ts of Blue Badge parking
Hearing loops can help change people’s lives
Careful planning key to enjoying holidays
Rail travel getting better for disabled
Bringing news to the visually impaired
Harsh reality of life with incurable EDS
Spare a thought for wheelchair users