Always interesting, often different

Archive for December, 2013

Why the difference?

This week I’ve had two very different shopping experiences in two major store chains.

Food shopping is never my favourite job, I order on-line as much as possible and I try to avoid busy and crowed times. Usually my shopping helper is my neighbour’s teenage daughter, she has Aspergers, and is a good helper, her traits mean that she knows my routine and remembers it. So shopping without her isn’t easy, but her Mum is ill and needs her daughter at home right now.

So, off to Tesco’s on my own for a quick shop for perishables. I use a local big store, which does have one motorised buggy with a large basket, but even if I use it I still can’t reach items on low or high shelves, so I still need a helper. Also, even if I can park near enough to stagger to customer services to collect the buggy, it has to be fetched from another part of the store, which can take up to 10 minutes, I can’t stand for that that long and there is not seating available. The buggy used to be kept by customer service, and I could sit in it it whilst the key was found. For some reason I could never fathom the key was kept somewhere other than the customer service desk! When the buggy was moved I did email the manager, explaining that the new arrangements would make it difficult for both myself and other disabled people, but got no reply. That was a foretaste of my shopping experience.

When I got to the customer service and asked for an assistant to help me shop, the first response I got was; “Why can’t you just use the trolley that attaches to a wheelchair?” When I explained that it only worked for manual wheelchairs (which I knew from trying previously) I was greeted with a blank stare. So, I asked for the assistant again, and with a big sigh, the woman on the desk sent a Tannoy message out, I was glad I was sitting in my wheelchair as it took over 10 minutes for someone to come, and then the man who arrived looked at me, spoke to the woman on customer service, and walked off, without explanation! A few minutes later he came back, and grunted he was ready to help.

My assistant was a man in his late twenties, whose first language was not English, and whilst I’m used to employing people from many different ethnic backgrounds, having managed nursing homes for over 20 years, I reckon my communications skills are pretty ok, but the guy helping me seemed to not understand me at all. Whatever I said I needed, he didn’t seem to know what it was, at the sandwich counter he didn’t know what a wrap was, and at the sushi bar picked out salmon when I asked for prawn, similarly he didn’t seem to know what Brie cheese was. For other items, he didn’t know where they were in the shop or was similarly puzzled as to what they were. Also, when he took something off the shelf, he didn’t check with me if it was the right item, so I had to constantly ask to check he had picked what I needed.

I was very glad when we got to checkout, where he packed everything well. On the way to the car I asked the man what training he was given, but he didn’t answer, just shrugging his shoulders. I don’t think I was an usual customer in terms of my shopping, I had a list, stuck to it and was as systematic as possible. But somehow nothing was quite as it should be. I felt as if I had been an inconvenience, that my helper would rather have been doing something else, anything other than working and assisting a customer.

Just a week later, 5 days before Xmas, I did my final shop, this time at Marks & Spencer at Kew retail park. My treat for holiday. What a different experience. Although customer service was busy, another assistant came up to me and asked if I needed help, no sooner has she left to go and find someone, another assistant came up to me and asked if I needed assistance. Just as she was speaking to me the first assistant came back and introduced me to my helper. She was probably in her late thirties, English was not her first language, but she understood exactly what I was saying.

The shop was really busy, but nothing was too much trouble, she checked exactly what I needed and found it, often suggesting I wait at the end of an isle so I didn’t need to struggle to get through the crowds. She doubled checked with me that everything was what I needed and even suggested other things I might like to try. There were two things that seemed to be out of stock, one of which was my favourite cherry juice. So, my helper went to the stock room to try and find them, but thoughtfully put an alternative, which was running low in my trolley to ensure I got a fruit juice I liked. The cherry juice soon arrived and we were off to checkout. Again, nothing was to much trouble, I was asked how I wanted everything packed and she made sure no bag was too heavy. There was no need to ask about customer service training, I couldn’t have had more assistance if my helper had seen one of those posh personal shoppers you see on TV at Liberty. I tried to give her a tip, but she wouldn’t accept it, saying it wasn’t allowed. So this is one way I can thank her for her excellent customer service.

Why was there such a difference in the two shops? Was it training, or the lack of it, was it attitude, or just gender, the woman being the more attuned to another woman’s needs. Was it that unsaid word ‘class’?

Well, for what it’s worth, I think it’s a combination of all of those things. As in any organisation, attitudes permeate from the top downwards. I’ve shopped at both Tesco and M&S for years. Even when I was able bodied I was well aware that each of those shops treated customers very differently and that difference is stronger and starker when a customer needs a little extra help to do any everyday task.

I wish I could afford to shop at M&S every time, but DLA does stretch to that, it’s definitely a treat and I cannot buy everything I need there, So I’m forced to shop at Tesco or Sainsbury, but a trip to my nearest Sainsbury about a month ago did not inspire confidence. There is no other large supermarket within reasonable travelling distance.

So I’m running out of options, I have to accept what is begrudging and what, in different circumstances I would not. Just because I can’t be totally independent. If I were back at work, and something similar had happened to a client I would be the first one trying to sort things out. Calling the shop manager, trying to explain how staff should have behaved differently. But, for me, there are more important battles to fight, more urgent things to do, which take up my emotional and physical energy.

Maybe Morrison’s will open a new supermarket in west London, but until then, I’m going to be putting off doing food shopping as much as possible.

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Comment, Everyday Life

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A Plea to the Supreme Court

Today, Jane Nicklinson the widow of Tony Nicklinson, the right to die campaigner was at the Supreme Court in London, to ask the judges to give guidance on whether it is permissible for a doctor to assist a severely disabled person to die, when it is that person’s wish.

Tony was severely disabled, totally dependant on others for all his care. He wanted the right to die, at a time of his own choosing. Because he was unable to commit suicide unaided he wanted to a doctor to help him die, and to ensure the doctor would not subsequently be prosecuted for murder, as currently the case in the UK.

This case is particularly unusual, because Tony died earlier this year on 22 August. Jane was given special permission by the courts to continue with Tony’s battle. Just 6 days before Tony died the High Court in London turned down his request to allow a doctor to help him die, but most unusually, gave immediate permission for him to appeal to the Supreme Court.

For Jane to continue fighting on Tony’s behalf, is not only a wonderful tribute to Tony, but unique in UK legal history. Normally, if someone dies their legal fight dies with them. Such is the importance of this case, that it can proceed even though Tony is no longer alive.

Jane is joined by Paul Lamb, another very disabled man who is making the same request as Tony did and was involved in the original High Court Case.

There was another person at the Supreme Court this morning. He case is similar, but differs slightly. Martin (whose surname is not disclosed) had a massive stoke in 2008. Martin wants to be able to take his own life at a suicide facility in Switzerland. He describes his current situation as “undignified, distressing and intolerable”.

Martin’s wife and other family members are unwilling to help him, so he wants to ensure that any medical or nursing professional who goes with him is not prosecuted, as could be the case at present. At the moment such decisions are made on a case by case basis. Although the current legal guidance is that prosecution is unlikely, Martin seeks greater reassurance and clearer guidance.

I am pleased that it has been reported on the BBC news website, that the DPP (Director of Public Prosecutions) will have to draw up new guidelines. This is a decision I feel sure the Supreme Court Judges have been right and wise in making.

The whole debate about right to die raises strong feelings, especially amongst people with disabilities. Some disabled people feel that allowing severely disabled people to have the right to self-determination when it comes to how they die could lead to them being pressured by others. They see allowing such decisions as the slippery slope towards the eugenics of the Hitler’s Nazi Regime.

As someone who is disabled, but has also been a Registered Nurse for over 30 years, I take a different view. I have seen too much suffering. I saw my mother dying from cancer, only being free of pain when she was unconscious for the last week of her life. She was several years younger than I am now. During my career I specialised in nursing people with terminal illnesses and also those with severe physically disabilities. No matter how much good nursing care we could give or how skilled the medical interventions, I saw too many people who felt their quality of life was so poor that they wanted help to die. I also saw greater number of others who had a good, pain free death.

About 25 years ago I joined what was then called The Voluntary Euthanasia Society and is now Dignity in Dying. I feel strongly that everyone, no matter how disabled, has the right to self-determination in the way that they die. That should not be compromised by the inability of physical actuality.

My children know that I have made an Advanced Directive. Should I ever have a massive stroke, or have major brain damage, I do not want to be kept alive. I don’t want artificial feeding or hydration or kept on a ventilator.

In my life I have enjoyed many good things and met wonderful people. I want my children and grandchildren to know that it is the quality of life that matters, not its quantity.

So my plea to the Supreme Court Judges is very simple; please let those of us who are unfortunate enough to be unable to control our own destinies have the reassurance that those who help us have a good death are not punished for their courageous deeds. Please give us dignity in the way we chose to die.

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Comment, Right to die

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Where were the people with disabilities?

I’ve just finished watching the funeral for Nelson Mandela. I’ve followed all the coverage closely over the last 10 days. South Africa is country dear to my heart, not only because of my involvement in the Anti-Apartheid movement, but because my adopted daughter, a Zulu, was born there.

Mandiba was a remarkable man, who with others transformed his country and gave it one of the most non-discriminatory constitutions in the world. So, in that wonderful rainbow nation where were the disabled people? As I watched the crowds in Pretoria outside Mandiba’s home, the thousands at the football stadium, the hundreds queuing to view his body and those who lined the route his coffin travelled to Qunu yesterday, I did not see one physically disabled person.

I asked my daughter, who is currently in South Africa with her sons, if she has seen disabled people on any of the local footage. She told me she’d only seen one person who was in the queue at Mandiba’s lying in state.

Because I was uncertain about writing this particular blog, I also sought advice from my daughter, a woman wise beyond her years. She told me the facilities in South Africa for disabled people are not good, that disabled people are not as respected as they should be. That the authorities think that just because they provide a couple of disabled parking bays, an extra accessible loo and some ramps they have done enough.

It seems as if not everyone is equal, despite the constitution (and I’m not just talking about the huge inequalities of wealth and opportunity that still exist). For disabled people, South Africa is rather like the UK was before the DDA was made law. I’m sure that they would be many experienced disabled people in the UK who would willingly give help and advice to the South African government and other powerful organisations to help disabled South Africans play a greater role in their country.

I would be honoured to be part of that.

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Murder at a Blue Badge Bay

The jailing for 5 years of Alan Watts on Thursday this week for the murder of Brian Holmes, because he wrongly believed that Mr Holmes should not have been parking in a Blue Badge Bay in the ASDA car park in Biggleswade, Bedfordshire, has caused me to ponder once again about how disabled people are treated.

In the case I’ve cited, Alan Homes who had recently recovered from cancer, was not the Blue Badge holder, but his wife who was disabled and shopping in the ASDA store was entitled to use the bay. So, on a wrong hasty premise, violence occurred and a much-loved man lost his life in a cruel, premature and dreadful way.

His murderer Watts was another pensioner, and in none of the reports that I have read was there any mention him being physically disabled. So I’m presuming that Watts himself was not entitled to use a Blue Badge, and was probably just judging and interfering in something that was actually nothing to do with him at all.

Why is it that some people chose to set themselves up as ‘moral police’ and think they know better than others?

Why do they think they have this right?

Is it because Ian Duncan-Smith and other Tories seek to demonise disabled people and threaten even the most disabled and the dying with loss of benefits?

One of the things that being disabled has taught me is that Is that often disabilities are hidden. One of my disabilities is not visible unless I try to walk any distance, I only have 40% lung function and that obviously greatly affects what I can do.

When I first started to need to use an electric buggy for mobilisation I was in my early 50s and I used to get very suspicious looks from people, some even suggested that I didn’t need to use it at all. If I felt brave enough I would explain why I needed to do so. Sometimes I just said “You’re lucky you don’t have my disability”, other times I just ignored the comments.

I sometimes get the impression some that non-disabled people do not think that we (as disabled people) should have any ‘preferential’ treatment.

Believe me, believing disabled is not ‘the easy option’. I, and many disabled people I know, would love to be well enough to work full-time, to be able to go shopping and not have to spend the rest of the day resting to get pain levels and breathlessness stable again. It would be lovely to be spontaneous again and not have to plan everything around how or where to park and when I’ve got someone to go with me.

I wish I didn’t need to use Blue Badge Bays, or a wheelchair, but I can’t change the fact of how that aspect of my life is governed.

Blue Badge Bays are NOT a privilege, they are a much-needed help for those of us that need to use them.

One of the organisations I belong to Disabled Motoring UK runs an annual survey called BayWatch. This asks members to monitor Blue Badge Bays in their local supermarket and check how many are being used by cars not displaying a Blue Badge and how the supermarkets deal with these infringements. As supermarket car parks are private land mis-use of bays is not a matter for Local Authority Parking Wardens. I’ve never joined in this survey as I’ve not felt brave enough to do so. I have always been concerned about encountering someone who would be abusive or threatening.

I once read about a disabled woman who printed out a sign which said ‘You’ve parked in my parking space, would you like my disability too?’ She used to place this on cars in her local supermarket who were parked in Blue Badge Bays without displaying a badge. I wish I could reach car windscreens from my wheelchair to do the same!

But, back to my original questions. Is our society just becoming more intolerant and/or violent? Should we as disabled people be more vocal when we are challenged or is silence the safe option? I don’t know the answer, but I know that statistics say that violent crime is decreasing, however I’m not sure I believe the statistics!

I do know that as a woman on my own, I’m not brave enough to challenge others, even though I would like to. I’ve been political all my life, being involved with CND, the Anti-Apartheid Campaign, Amnesty International and many others, but now my campaigning has to be through this blog and the occasional tweet or letter to a newspaper.

Disabled people deserve the same rights and considerations as any other human beings. We don’t need sympathy, just understanding and some help to do those things which non-disabled people take for granted.

It is a mitzvah (commandment) in Jewish teaching that we should not judge others harshly. In the Christian faith there is a saying by Jesus “Judge not least you be judged”. My grandmother taught me “If you can’t say anything good about someone keep quiet!”

If more people followed even one of these dictums the world would be a better place and disabled people would be treated with less suspicion and more courtesy.

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Blue Badge Bays, Comment

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