Always interesting, often different

Posts tagged ‘Wheelchair’

Dating and when to tell………

This blog post is part of Blogging Against Disablism Day 2014. The date was 1st May, but better late than never!

My last relationship ended almost two years ago and I’ve decided to start dating again. Over the past 5 years, since I was last dating, my need to use my wheelchair has increased to to point where I don’t walk anywhere outside my flat. So, how do I convey this to a potential partner?

My wheelchair is a vital part of my life, in the same way as my iPhone, iPad and car. But I don’t want it to define who I am. My personal skills and qualities are no different to when I was fully able-bodied. My interests, hobbies, likes and dislikes are pretty much the same too. I still have itchy feet and long to travel more in the UK and abroad.

I have never been sporty – I hated games at school and would do anything to avoid playing – especially on cold winter days! Being forced to run round a frozen hockey field three times before play commenced by a sadistic games mistress was never my idea of fun! The fact that I never found a sport I was any good at probably contributed to my preference for playing Scrabble or other board games.

Whilst I love exploring new places and being outside on long sumner days, I don’t understand the lure of going for long walks when it’s cold and windy. I’ve never enjoyed rambling or climbing and certainly not in the rain! Give me a ruined building to explore and photograph or the chance to enjoy a visit to a National Trust property any day.

I love going to art galleries and exhibitions, to be challenged by installations or modern abstracts as much as I enjoy Monet, Manet, de Lempicka or Van Gough. Gallery mooching has always been my idea of a wonderful day out. Walking for hours or bird-watching has never appealed.

I understand for some people that their need to be physically active is a vital part of their lives, especially if they have a sedentary job. As a Nurse I was always on my feet at work, even as a manager I would be found purposefully walking through the building, making sure my staff were doing their job correctly and that patients were receiving the care they needed. My staff never knew when, or for how long I would be on each floor, a great way of being visual, available and informed. At the end of my working week, I looked for enjoyment in theatre, ballet and exhibitions, where I could sit down from time to time. I would much rather stretch my brain than go to the gym!

The only thing I really miss is going to a club, particularly the women’s only events that I once helped to organise. But may be at almost 60 I’m getting too old for clubbing!

As for the things that annoy me, I’m just as intolerant of people who are prejudiced or racist, drive badly and cut me up or ride their bicycles as if they own the road as I have always been. I dislike being in queues when shop assistants are gossiping with their friends instead of serving customers or being pressured to buy something I’m still making my mind up about. I get angry reading or hearing about adults who abuse children, I’m ashamed to share a profession with nurses who are uncaring, neglectful or just downright lazy. None of these views have changed over the years.

So as you can see, in someways, I don’t feel I have changed as a person because of needing to use a wheelchair. When I talk to someone I hope to be dating, I’m very clear to say that the only major difference my disability makes is the need to plan when and where I’m going to park. Most of the places I need or want to visit are fully accessible.

Long before I started to use a wheelchair I didn’t use public transport, I disliked being in overcrowded busses and trains especially the underground. So ever since I moved back to London, I have driven everywhere. From my perspective nothing has changed for me in that respect either.

But for the some of the women (and as I’ve heard from straight friends this applies to men too) I have talked to seem to feel that using a wheelchair is something that should be declared up-front. I’ve seen other on-line profiles when women have either shown photos of themselves in their chair or mentioned that they are disabled.

My thinking process has been different, I want someone to get to know me because of my qualities as a person, and understand what I would bring to a relationship. I take the view that I’m more than my chair – that being disabled has not changed who I am as a person. It’s just an extra facet of my personality. Am I wrong?

Well, I guess one thing comes out of my rationale, if someone doesn’t want to date me just because I use a wheelchair, they ain’t worth knowing! I won’t date a right-wing racist – however good looking they might be! Even if I wasn’t disabled I wouldn’t want to know someone who was prejudiced against disabled people.

I will accept that having to pace myself in terms of not getting over tired or making sure my pain control remains good can be restricting. One girlfriend I dated had two dogs, their needs limited our lives far more than my wheelchair ever did.

Life is about sharing and compromise.

So, back to my question, what is the right time to tell someone I’m disabled? I tend to talk about my need to use a wheelchair at about the same time as I’m telling someone my adopted daughter has a different skin colour to me.

Is this the right timing? Both pieces of information can elicit very different responses, but ones that tell me a lot about the person I’m talking to.

I’ve recently had a delightful date with a woman who didn’t say anything about her Caribbean heritage. Her ethnicity wasn’t obvious from the photo she sent me – she is quite light skinned. On meeting her I was more interested in her as a person than where her parents came from. We are all defined, in some way by our families and how we are raised, for me the most important part of someone’s heritage is their tolerance and open mindedness.

I’m very clear in telling a prospective date how independent I am and that I have paid PA’s who do any housework and caring tasks I need. Also, I have no wish to live with anyone full-time again. I value my solo visits to my cousin and my time engaging in genealogy research, neither of which I would expect a partner to share on a regular basis. Nor would I count on a partner understanding my love of US crime or hospital dramas!

So I don’t think I’m being unrealistic or unreasonable.

But am I?

I would be really interested in hearing from others how they deal with dating and what success they’ve had.

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.

Asking the obvious

I was recently referred back to Charing Cross Hospital to the Rheumatology department for a steroid injection in my left wrist, I’ve been there before and had excellent care from a lovely Consultant who has sadly left.

I was seen by a Registrar who I’d not met before, and for some reason my full notes were not available. So, I gave him a potted medical history; severe spinal arthritis, scoliosis of the spine, displaced vertebrae in my neck, only 50% use of my left arm and 40% Lung function – not smoking related. I showed him a list of my medication, which includes morphine patches for pain relief.

He then asked why I was using a wheelchair………………!!

Which left me rather speechless. I‘m not usually lost for words, but said something like; “Severe arthritis, on morphine, get very breathless, is that enough?”

I got a sort of grunt in reply.

Afterwards I felt really shocked.  Was it too much to except that a senior Doctor would realise why I was using a wheelchair, without needing to ask?

Are my expectations too high?

Or is the NHS not recruiting Doctors of a high enough caliber?

Trying to Move

I have been trying to move from my current flat for almost four years. It is unsuitable for me because I cannot get my electric wheelchair through the front door to charge it without folding it, which means taking the batteries out and lifting the chair and the batteries over two steps, something I have to rely on somebody else to do.

A few weeks ago I went to see a flat that should have been ideal for me, and with some adaptations it would be, but without them it is impossible for me. Ideally I need a walk/wheel in shower in the bathroom. I can just, but not very safely, manage to use a bath, manoeuvring myself onto a bath board but need
shower controls and the shower head to be within reach as my balance is too poor to allow me to stand.

The housing association who own the flat are willing to do the adaptations, but then a great big snag occurred. The flat I want to move to so I am nearer my family is in a different London borough from the one I’m now in.

Before the adaptations are undertaken I have to be assessed by an OT (Occupational Therapist) who will ensure that the controls are in the right place, the seat is safe and suitable and the grab rails are at the correct height. The OT from the borough in which I live is not allowed to assess me for a property outside the boundaries of the borough. When the OTs from the borough
I am moving to were contacted, the housing association was told that it is not possible for an OT assessment to be done on me unless I am already living in the borough!

Hence I am now in a catch 22 situation, wherever and whenever I move.

If I move before the adaptations are carried out I would have to wait to be assessed, then wait for funding to be agreed and then wait again for the work to be carried out. Before I moved into this flat, bathroom adaptations were needed and the whole process took about six months. This therefore makes moving and waiting a non-starter.

My wonderful new Motability car has a specially fitted electric hoist, so my wheelchair, complete with batteries, is hoisted in and out with minimal assistance from me. All of which is really great, and gives me a greater degree of independence that I have had for some years. But I still need to move to a
flat with level access so I can easily get my chair in through the front door and charge the batteries every few days.

I have no idea how long it will take me to move, all I know is that the housing association is; “trying to find a solution”.

All I can say is, ‘Please keep trying’, because the longer I stay where I am, the more trying it is for me!

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