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Posts tagged ‘Wheelchair Access’

Disability Activists Challenging Labour

Last week the Labour Party had one of its most successful national conferences. Large numbers of delegates came from all over the UK to share ideas and take part in debates. Many fringe events were over subscribed. The World Transformed ran a parallel event. A festival of politics, art, music and culture, it attracted many who were new to politics. All their events were sold out and many had long queues to gain entry. The young labour people I spoke with were enthused to become more involved.

For the first time in a several years there was a separate one day Women’s Conference. I was very fortunate to be delegated by my constituency to attend. I was delighted to have the opportunity to speak to over 2000 women delegates. Speaking of my 8 year wait to find a suitably adapted flat, I told of the difficulties I experienced getting my care package transferred from one London borough to another, less than 5 miles away. I pointed out the failures of the 2014 Care Act and the need for services for disabled people to be fully integrated. But despite all the good things, one practical issue dominated conference. Access for disabled delegates and visitors. There were enablers on hand at the main venues , but they were not always fully trained. 

The Women’s Conference was at the Metropole Hotel on Brighton seafront. The main hall was great once I got inside but the route to get there was tortuous! The access for able bodied people was up a sweeping staircase. The disability access was via a very small lift accommodating a wheelchair & one other person only. Then it was a shlep through back corridors, with narrow corners and fire doors to negotiate. For anyone who could not manage stairs, but could walk with assistance of aids, the walk would have been almost impossible. Whilst there were mobility scooters available to borrow, none would have managed that route. There must have been a level access from another part of the hotel, or from a side road, but no information about this was given to disabled delegates. This may have been for security reasons. But my guess is that arrangements were made without input from someone with a physical disability. 

Often it was minor stuff that was a problem. The ramp into the Metropole ended in a door which opened into the hotel, with a press button opener. Getting out again was impossible without assistance as there was no button on the inside! I was told that the disabled toilets didn’t allow for sufficient space to manoeuvre a wheelchair, a common problem. I will never leave my chair outside a loo unless I have someone guarding it. All of these things reduce one’s independence. 

There were difficulties for delegates who needed passes for their own helpers. If there were last minute changes to personnel, that meant lengthy queues to get passes sorted. My own delegate pass was not cleared when I arrived and even after it had been sorted when I got into Conference I was told that I only had visitor rights! There was a flurry of phone calls to enable me to be called to speak. 

Brighton is not the easiest of places for wheelchair users. Cobbled streets and narrow pavements require careful navigation. But all of the entrances for the Conference venue itself involved passing through safety gates, some of which were both narrow and steep. Others were on the edge of pavements covering dipped curbs, making crossing the road hazardous. Several of the venues for fringe meetings were not accessible at all. One that I attended had no signage and involved a temporary ramp. My helper had to go inside the hotel to find out how I could reach the venue room, then alert me as to where to wait for the ramp. Again, this precludes independence. 

Let us in!

One group of disabled people banded together to give out 5000 leaflets raising issues about access and involvement within local Labour Party organisations. Party Participation and Disabled People have been raising concerns throughout the Party. A letter to the General Secretary elicited a reply quoting legislation (The Disability Discrimination Act) that has been superseded. A lamentable level of ignorance. The group is seeking formal recognition of Disability Officers at all levels of the party with elected officers on the NEC and Conference Arrangement Committees. 

A second group of disabled people lead by Jonathan Fletcher an activist from Ashton Under Lyne, have come together to form Project 125. At least 20% of people in the UK have a disability. The Labour Party has all women short lists for council and parliamentary elections. There are requirements for constituencies and committees to have BAEM (Black and Ethic Minority) places. No such arrangements are in place for disabled candidates. The group is seeking to ensure at least 125 people with disabilities have the opportunity to stand as parliamentary candidates. With 650 seats in parliament, 125 represents the 20% of disabled people. Both groups are getting backing from MPs. The issue of participation will be raised within the upcoming review of democracy within the party, which will be lead by Katy Clarke, who is currently Jeremy Corbyn’s political secretary. 

Disabled people are making sure their voices and viewpoints are heard. There is no excuse for lack of accessibility and a failure to consult. Disabled people must advise on conference planning. I am involved in both groups, we are working together. Our activism and solidarity will enable us to succeed. 

This post first appeared on my Huffington Post blog

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Why this election is personal

The disability vote and why it matters

The UK is now in the midst of a General Election campaign. I have been a political activist in the UK and US since I was 14, and this time is no different. I’m involved in organisation and campaign strategy. I also manage several social media accounts to support our local candidates. 

I’m doing all of this because I want a change of government.

But for me, this is not just about voting Labour, a party I passionately believe in. A party that has the best policies to give us greater equality. In Jeremy Corbyn we have a leader who seeks a great distribution of wealth, and goverment for the many, not the few. The election is also about what this cruel and heartless government and the two preceding ones have done to disabled people.

Almost 19% of UK citizens have a disability. For most of us, we were either born with the disability, or we have become disabled having worked for many years. Those of us who have congenital conditions often suffered as children. Sometimes through neglect and sometimes through ignorance. Those of us who have acquired disabilities frequently find that even though want to work again, even part-time, that option is not possible. 

I have one friend, A GP who used to work with drug addicts. He has had a stoke, and as a result needs a wheelchair to get around. But his home is not wheelchair accessible, so he is denied a wheelchair. If he had a wheelchair, kept in his car or in a garage, he would be able to work again. But this is now denied him. All his years of training and expertise have gone to waste. He cannot afford to move, as he can’t get a mortgage because he’s not working. 

I have another friend, she has a congenital condition, and experienced a abusive childhood. She has trained as an actor and voice coach. Most of her work opportunities are in London. But she can’t afford to live here. So she struggles to survive on part-time hourly paid jobs with no security. She is also in constant pain and cannot afford ‘time out’ for the surgery she needs.

These storied are replicated all over the UK. I know other people who could work part-time, but cannot get the care support they need to enable to be employable.

So this election is personal for me and for my disabled friends. We are asking to become valued members of society again. It is wrong to view us as scroungers or cheats. We have skills aplenty – but need accessible transport and work environments. We need employers to treat us, and all workers, fairly. Did you know most people who use food banks are actually in work?

We need an NHS, free at the point of delivery that is run for the benefit of patients, not for managers or private companies bidding to run services. We need more nurses, especially in mental health, who are paid properly for the work they do. We want properly funded schools for our children and grandchildren. The money this would take can easily be found if companies and Tory backers no longer have ‘sweetheart tax deals’.

The only way that can happen is if people vote out Theresa May and her cronies.

Disabled people are becoming more involved in this election than ever before. My next post will give the story of what’s happening. 

 

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Moving Miracle

For the last 8 years I was living in a flat that was totally unsuitable for my needs. It was in a very expensive area, my neighbour’s houses sold for over £1m. This had the added drawback of constant building works for basements or extensions, meaning on average two lots of builders blocking the road with lorries everyday, on numerous occasions. There were lovely local shops and cafes. But I felt trapped and unsafe living there.

Trapped, because I couldn’t leave the house without support. The front door was narrow, with three steps, I couldn’t get my wheelchair from my car where it lived, into the flat to charge it, without it being dismantled, something my carers had to do for me. Unsafe, because my downstairs neighbour misused alcohol – I don’t think I ever encountered him totally sober. He also had a record of violence and had on several occasions tried to con or force his way into my flat. Both of these conditions were overlaid with mental health issues. Due to his behaviour towards me he was not supposed to interact with me in any way. But the alcohol had clearly affected his memory and he harassed me on a frequent basis. 

So going out of my flat or coming back was fraught and very scary. There were times when I would park outside and have to wait inside the car for over 30 minutes before he stopped blocking may way though the communal gate, until he got bored and either went home or off to the pub. I did try and involve the police, but this was low-level stuff and by the time anyone arrived he was usually nowhere to be seen. On several occasions late at night the police tried to speak to him, but he was so drunk when he answered the door that he had no recollection of anything in the last 24 hours! 

I got myself on to both the Council and Housing Association waiting lists, as well as applying to various other housing associations, which specialised in housing for disabled people. On rare occasions I was actually offered a flat to view. These flats fell into two categories, they were either not adapted at all and had been totally wrongly described on the relevant websites, or they had some adaptations, but getting in or out of the building was impossible without someone being with me. 

On at least five occasions, as a result of being on a flat-swapping site Homeswapper, I found a flat that would have been fine for me, but when the people from the other flats visited mine they either encountered my downstairs neighbour, which ensured they were no longer interested, or my flat was too small for them. There were so many time-wasters on these sites too!! All of which was very frustrating and disappointing. 

I really was beginning to despair, I just couldn’t see how I was going to find anywhere suitable to live. Because of all my medical conditions I didn’t want to move outside London, also that is where both my children are based and my grandsons too. 

Over the last few years I had received some support from a charity called Elizabeth Finn Care. As part of that I had a yearly visit from one of their staff and on last years visit the person who came to see me told me of a small housing co-op just south of the Thames that had a flat she thought would be ideal for me and for some reason, they had had difficulties letting it. 

I checked up the website and contacted them. It took absolutely ages to get any response, I thought the flat would have been let already, but no, by a miracle it was still vacant. I filled in the application form and one sunny winters day my partner Eve I went to see it. The flat is on a lovely quiet street, level access, great adaptations, some of which need updating, and with direct access onto a lovely secluded shared garden. I fell in love with it straight away. But most importantly it is well designed so I can use my wheelchair to get everywhere in the flat. 

The kitchen has an adjustable height hob & built-in oven at the right height for me. So I might even be able to cook again. However although the sink is also height adjustable my tumble dryer needs to be underneath it, so there is no way I can do washing up – I’m really happy to leave that to my carers! I also now have a washing machine, which came free with the flat, so no more trips to the laundrette. It makes such a difference to be able to wash & dry clothes etc when I need to without having to wait for a load to take out and then collect days later.

After my visit I had several weeks of waiting, it seemed to be ages before I was called to a meeting of the allocations panel, when I had to put my case and indicate how I would contribute to the running of the co-op. Luckily my professional background means I have lots of transferable skills which helped. My living conditions helped too especially as my old flat by now had large areas of damp which was not helping with my lung function.

When I got the phone call saying I had got the flat, I almost couldn’t believe it!! The prefect flat, in a lovely quiet development, with parking just outside and a garden I could actually use. All I had to do was organise a move. As a child I moved home every 3-5 years and lived with the rule that if it hadn’t been used in the last 3 years it went to charity. This is considerably more difficult when you’ve lived somewhere for almost 10 years. But I was lucky in that I have a wonderful friend who loves helping people declutter, so we had several afternoons work, rewarding ourselves with Chinese takeaways. Our synagogue supports an Asylum Seekers project – so it was easy to decide where my unwanted clothes would go. I had to reduce my books too, that was definitely the hardest part. 

I managed to find a removal company who would pack everything for me at a reasonable price, so that was one problem taken care of. Then it was dealing with all the utilities companies, I was infuriated to discover that Thames Water told me I should have had a large discount on my flat because of my disability! Needless to say it couldn’t be backdated, but I will be trying to get it for my new flat. I was certainly pleased to be telling Eon I no longer wanted their services, I had signed up via a deal with Age UK, believed it to be the best, but recently evidence has shown I and many others have been duped, so I’ll be keeping the bills and hoping to get some money back. 

For lots of reasons I would be very glad to leave that flat, but when I told my lovely upstairs neighbour I was moving and would be so sad to leave her, she told me she was moving too. I was so pleased for her as that meant she would be free of our dreadful neighbour too! 

The housing co-op were very helpful in allowing me access several days before my tenancy officially started so I could get my wifi TV and phone set up before I moved in. Virgin were really great – they look after disabled customers who cannot set up their new equipment very well. I didn’t have to pay any setup costs at all which saved me a useful sum of money.  

Moving day finally arrived and with the help of carers at my old flat and Nico and two lovely friends from our synagogue at the new flat everything was moved. There were the usual panics about things going missing, the worst one being my wheelchair charger. My carer swore she had put it into my car with other essentials, but when I asked Eve to get it for me she couldn’t find it – big panic! I managed to find a shop several miles away that stocked the model I needed and Eve shlepped to collect it, only to discover it was at their other branch five miles further away! Eventually she managed to get it back to me and I was mobile again. But, guess what? When Eve moved some final boxes from the car there it was underneath the last bag! Well at least I now have a spare that I can leave in the car for when I’m travelling. 

One thing I did decide I needed due to my increased pain levels, as the only position I can get any relief from my trapped nerve is by laying on my side in bed, was to find a way of being able to turn the main light in my bedroom on and off without getting out of bed. A quick scan of Amazon and I discovered a wifi controlled light bulb. I found a lovely round lampshade too and eagerly awaited their arrival. Luckily one of my visitors was tall enough to put both the bulb and shade up for me & it works perfectly! Not only does it switch on and off remotely but I can change the warmth or coolness of the light. So that’s another of life’s challenges resolved.

It has taken quite a time to get everything sorted and put in place so I can find items again. For the first few weeks I really couldn’t believe how lucky I was, despite a boiler breakdown and having a new one installed, also the intercom system decided to die, so more workmen came to install a much improved model. 

I’ve had lots of friends come to visit, which has been wonderful & I might even have a housewarming party! 

Trying to get my care package transferred and paid for by my new borough, has been a much less simple process, the saga is on-going, and will be the subject of a separate blog post.

The final thing I had do was to get my Mezuzah put up on the door post. A mezuzah is a parchment, or klaf, on which certain verses of the Torah are inscribed (Deuteronomy 6:4-9, 11:13-21). Mezuzah refers as well to the case or container in which the parchment is enclosed. A mezuzah serves two functions: Every time you enter or leave, the mezuzah reminds you that you have a covenant with God; second, the mezuzah serves as a symbol to everyone else that this particular dwelling is constituted as a Jewish household. 

One of the last things that was done when I left my old flat was to remove my mezuzah and put it safely in a small plastic bag inside my handbag so I knew exactly where it was when I needed to affix it to my new front door. Most Liberal Jews, such as myself, just have one Mezuzah, but more orthodox Jews place one on the lintel  of all the main living and sleeping rooms.

Mezuzahs come in so many different designs and prices. I had bought this one in a traditional Judaica shop in Golders Green (one of the most Jewish areas of London), which has sadly now closed. Mine is very like the one on the image at the top of this post. I was pleased the parchment was intact and I could just transfer it without needing new parchment, as it seem to remember it costing more that the Mezuzah itself!

Jewish custom says this should be done with 30 days of moving, so it was a great delight to have my wonderful Rabbi & her lovely dog come & visit to say the prayers and help ensure that everything was done the right way. My partner shared the ceremony with me and I finally felt I had a permanent and blessed home.

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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.

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Post Office Blues

One of the local charities where I live gives assistance to people such as myself who need help with shopping or other tasks. Jill, my wonderful cheerful volunteer is a boon. She helps me do supermarket shopping. A much less stressful experience than using the staff in the supermarket. (See my blog entitled Why the Difference?). Jill also willingly helps with other tasks that are hard for me to do.

Bright and breezy though Jill always is, her face darkens when I ask her to send a parcel or letter recorded delivery for me. The only post office near where I live is a Sub-Post Office,  (the local main post office was closed a couple of years back) is not easily wheelchair accessible. On the one day I tried, accompanied by a friend to help get my chair over the door step, I was told that my wheelchair was too big to use inside!! The postmaster is not known for his sunny countenance or his speed. When I used to be able to walk into the sub-post office, he once yelled at me for moving a chair so I could sit down as the queue was quite long.

If posting a parcel is not an easy task, collecting one is harder. The local collection office is small and inaccessible. Again, when I could manage to walk in I used to sit on one of the two seats provided, and hope that I could keep my place in the inevitable long queue. But the seats were then removed, I never discovered why. So I resorted to driving into to the car park and tooting the car horn until someone took pity on me and collected my parcel for me.

Driving in and out of the sorting office car park is somewhat hazardous as it’s off a busy main road. It is also rather small, meaning no possibility of turning around. Resulting in having to back out, engendering some interesting hand signals from other motorists.

Having Jill helping me means I can wait nearby in a supermarket car park, whilst she collects my package for me. Making everything much easier and less stressful.

But why can’t all Post Offices and sorting offices be wheelchair accessible and have seating for those who need it? The main Post Office in Eastbourne, East Sussex is a superb example of how a Post Office should be.

I’m aware that some of the regulations for Crown Post Offices do not apply to Sub Post Offices, but accessibility and usability is essential so that everyone can use them freely. After all, we cannot go elsewhere, the Post Office still has a monopoly.

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