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Posts tagged ‘Disabled People’

Beyond Absurd

Letusin.jpgMy previous post was about the formation of two new campaigning groups within the Labour Party. However it did not give the back story as to why Project 125 and Party Participation and Disabled People were formed. This post explains why.

The “official” Disability group within the Labour Party is called Disability Labour (DL). It has a constitution and is recognised by the NEC, Labour’s governing body. 

The way the group works, however, is bizarre. Whilst there is a committee consisting of a Chair, 2 Vice Chairs, a Secretary and Treasurer the people elected to these posts at the last AGM were not elected by the membership of Disability Labour as a whole. The electorate consisted of a small group of people who could afford to travel to Manchester to a venue that was not fully accessible. They elected members to an Executive Committee. The EC then agreed officer posts within themselves. Hardly democratic. There were requests for the meeting to be streamed to allow others members such as myself to participate. This was refused by the Chair. There were also calls to allow officers to be directly elected by the entire membership. This was also refused, despite it being allowed within the constitution.

Many members, including myself did not receive the calling notice for the AGM until 2 weeks before. This is a breach of the 28 day rule for calling a DIsability Labour AGM. The irony of the AGM being held on 1st April was not lost on us!

There is another absurd issue. All correspondence to members of Disability Labour can only be sent out via Labour HQ. The Officers do not have membership information and are reliant on others to send out mailings. I cannot fathom any reason for this. I’m a membership officer for a ward in my local Party. I receive the full membership list for that ward together with regular updates. Of course, I have to sign a confidentiality and proper use agreement. Why can the same system not operate within Disability Labour?

I cannot ascertain the number of members DL has. There are 97 members in their Facebook group. The majority of this group are vociferous in their dissatisfaction of the way the organisation is currently run.

The committee does not appear to meet at regular intervals. Members of DL are rarely given details of these meetings and in two years I and other members have never had sight of any minutes or decisions taken. There do not appear to be any audited accounts either.

Two of the current officers tell members that they have tried to resolve the issue of the membership list. However when some members have offered to assist with this process they have not received any response from the officers.

A recent thread on the DL Facebook page has asked if members are happy with the way DL is run. Not one person responding to that post is satisfied with the current arrangements.

I am also a member of LGBT Labour. Their membership system is totally different. No data is held by Labour HQ. Members who are eligible to join the group apply directly to the group and membership records are kept securely by the Secretary and Membership Secretary. There is absolutely no reason why the same system cannot apply to DL membership keeping. Nothing in the constitution of DL prohibits membership data being held by DL officers. 

If membership data were to be transferred to DL officers, all that would be required  is to inform members of the change and given them the opportunity to decline to have their personal information transferred. 

There is nothing in the DL constitution that prohibits members from attending an EC meeting as observers. Previously members have not been given any information about when or where the EC is meeting. This week is the first time I’ve seen the date of an EC meeting. One officer broke ranks and chose to disclose it. As yet we do not know where the EC will meet. I have asked for details, I hope I will be given them, but I’m not holding my breath.

All of this bureaucratic nightmare has a major consequence. DL is not able to represent disabled people within the Labour Party. Many of us experience discrimination and side-lining. This is not acceptable. All sections of the party must comply with the Equality Act 2010.

Party Participation and Disabled People and Project 125, have been launched as a direct consequence of DL’s failure to advocate for its members. We wanted to bring these changes through DL, but that doesn’t seem possible at the moment. 

DL should also be supporting the new Labour Shadow Secretary for Disabled People Marsha de Cordova in her role of challenging Tory policies thst cause misery to disabled people.

250 Labour Party members have joined Party Participation and Disabled People and Project 125 has 275 Labour members, both groups more than doubling the DL Facebook group membership. 

The two new groups are buzzing with ideas and have committed volunteers wanting to contribute. The skills we have are welcomed and the collaborative working is a joy to be part of. Websites are under design and campaigning materials are being produced.

The Labour Party seeks to be ‘For the many and not the few’, but within its own ranks disabled people are often marginalised or ignored. Many people with disabilities cannot attend ward or constituency meetings. Venues are inaccessible to wheelchair users, there is no loop system or microphones to enable deaf people to participate. This breaches the Equality Act 2010. As yet, no one has sued their local Party. Some are entitled to, as the EA 2010 applies to any organisation with over 25 members. Thus it applies to the vast majority of Labour Party Constituency Organisations.

The current situation is a disgrace. As a Labour Party member I’m ashamed that DL is so badly run, and that it seems impossible for ordinary members to have any meaningful involvement. Change is needed. Change will happen, either within DL itself or by involvement from MPs and the leadership. 

The question is when and by whom? It can’t come soon enough for me.

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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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5 Different Ways to Survive Disability

 

Heather Morgan

Guest Post from Heather

When I was first drafting my “Ways to Survive Disability” I sent a copy to my friend Heather in Canada. We have in fact never met, but know each other through family connections. Instead of amending what I had written Heather, with her different take on life, came up with these words of wisdom. I am honoured that she has allowed me to share them. 

Heather Morgan lives with her husband and teenage children in Canada, where she writes, coaches and looks for joy in the everyday. She has lived with disability in herself and her children her whole life, and recently joined the ranks of wheelchair users everywhere. Heather now blogs at: poweredbylove

1. Find ways to (re)connect. Friends and family are important to everyone, but when disability strikes it can make it difficult sometimes to connect in the ways you are used to. This in turn can lead to feelings of isolation and increase issues with depression. This can be particularly difficult if your disability affects your energy levels, but finding new and creative ways to connect becomes really important at this point, for you and those who care about you. My husband and I have always enjoyed being outdoors and exercising together, but that’s almost impossible for me now on my own steam. However, he found a charity that offers special running strollers for adults with a disability to use in road races. So in May, he and I will be out racing a 10k race together.

2. Be willing to try old things in new ways. For example, I used to love cooking, and now energy is at a premium, so I don’t get to do much cooking anymore. But I’m discovering how much I still enjoy putting salads together for lunch for the family, even if it’s out of a kit from the store. 

3. Find ways to nurture gratitude. There are a lot of new frustrations available for the newly disabled. If you’re anything like me you may have never noticed just how inaccessible the area you live is before now. Not to mention all the things you never had to think twice about doing that are now challenging or even out of the question. But it turns out that cultivating gratitude in the midst of this space can be really helpful for our mental health. I’m back at it again after a brief lapse, and am trying to look for at least three things a day to be grateful for, which I then write down in a journal before I head to bed.

4. Practice being honest. I don’t just mean about whether you ate the last cookie or invited your partner’s family over next Tuesday. I mean practice being honest about yourself – with yourself and others. Maybe it’s just me, but I’ve never been particularly honest with myself about how my body was feeling. Tired? It didn’t matter, I still had things to do. Sore? That wasn’t going to get the dinner cooked. Hungry? Thirsty? I’ll get to that as soon as I can. But now not only is it important that I’m honest with myself about how I’m feeling and what I need, I also have to learn to be honest with those around me. 

5. You are not your disability. When we first get diagnosed with a disability it can rapidly become all we think about, and all we spend our time on. That’s ok for a time, but before too long you’re going to want to remind yourself of who you are. Although “what you did” may or may not be available for you to do anymore, depending on the nature of your disability, “who you are” – your values, your passions – those will always be with you. Finding ways to be “you” on a daily or weekly basis will go a long way to helping you make the transition to your new way of life.

 

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The Strangest of Elections

But some wonderful outcomes

I have been involved in helping to run election campaigns since I was 14. Then I was helping at the constituency office in Okehampton, Devon where I went to school. For many years I was an organiser and then Election Agent. I worked in by-elections as well as General and European elections. I’ve seen a lot in 45 years.

But this election was unlike any other I’ve ever been involved in. 

For the first time, Social media had a huge impact. I was running two different twitter accounts. I was also re-tweeting for our next door candidate, who is a personal friend. I could have spent my whole time doing nothing but tweeting everyday. There were also two Facebook pages to maintain and update. I also had a very sharp learning curve in how to use Instagram. I still don’t really understand why the memes I posted had so much impact. 

The next thing that was so different was the diametrically opposite campaign strategies of the two main party leaders. Theresa May, seemed very reluctant to meet any of the public. Possibly a sensible strategy, bearing in mind how badly she came over when people tried to talk to her. Jeremy Corbyn was the opposite, and welcomed meeting voters and listening to what they had to say. 

But the most noticeable difference to me was the lack of political mud slinging from Jeremy’s team. It made a refreshing change and was clearly popular with the electorate. 

For many people it wasn’t ‘All about Brexit’ as Theresa May wanted it to be.  Talking to people on the doorstep, what excited people were the Labour manifesto pledges. The memes about them were some of the most popular images shared on social media.  

What was also new in this election, particularly in the Labour Party was the involvement of Momentum, the campaigning organisation set up to back Jeremy Corbyn’s leadership bids. Momentum ran an excellent social media campaign. They also attracted large numbers of young people to help with phone banking. Some of the training sessions were run by staffers from Bernie Sanders’ campaign team.

Two other organisations, Collective Voice and EL4JC, produced wonderful literature and memorable short videos. The endorsement from actors, film makers and grime artists ensured the enthusiasm of the younger generation.

They also surprised the pollsters by going out and voting.

For me as a disabled person, I was able to be involved in campaigning from my bed. Many other disabled people helped the campaign by being able to phone-bank from the comfort of their own homes. There will always be room for more inclusion, but we have made a good start.

Two Labour candidates with disabilities won seats, and a third came within 1,200 votes of winning. Marie Rimmer who retained her seat of St Helens South and Whiston has a hearing impairment.  She was Shadow Minister for Disabled People before the election. So Labour now has three MPs with declared disabilities. 

Stephen Lloyd is the only Liberal Democrat MP with a declared disability. He has had a hearing impairment since childhood. Two Conservative MPs, Paul Maynard and Robert Halfon both have cerebral palsy. I have been unable to discover any other MPs who have disabilities. By having less than 1% of MPs with a disability, Westminster is clearly not representative of the 19% of disabled people in the UK. 

It is often difficult for people with a disability to get accepted as political candidates, either for local councils or for Parliament. For a few years the Access to Elected Office Fund was able to give financial support to disabled candidates to cover extra expenses. But this fund closed in 2015, just four years after its launch. It leaves prospective MPs or councillors who are disabled with no additional funding support. 

One previous parliamentary candidate was unable to stand during the recent campaign. Emily Brothers who has both vision and hearing impairments, was a Labour candidate in 2015. She was financially supported and able to campaign effectively. This time with no funding available she felt unable to be a candidate.

Mary Griffiths Clarke, was another Labour candidate with a disability. She  has ME. She stood in a Tory/Labour marginal in Afron, Wales. Mary was beaten by just 92 votes. I’m sure the extra money would have supported her and enabled her to win. It is disgraceful that the last Tory government closed the AEO Fund. I would expect any future Labour government to restore it as soon as possible. Disabled people have a right to enter public life and should be assisted to do so.

The two new Labour MPs, Marsha de Cordova, who is visually impaired and Jared O’Mara who has cerebral palsy both had historic victories.

Marsha won Battersea, overturning a Tory majority of almost 8,000. She ousted Jane Ellison, a Treasury Minister, in an amazing campaign. She had hundreds of young people, many from Momentum, door-knocking and delivering leaflets for her. This, together with Marsha’s own work ethic, activist background and focus on local issues assured her victory. I’m proud that I played a part, albeit a small one. 

Jared’s victory over Nick Clegg was considered one of the most dramatic results of election night. He again was a local activist and campaigner, who like Marsha had worked for disability charities. I know little of his campaign, but he must have got the vote of every student in the city who wanted revenge on Nick Clegg. A former Liberal Democrat leader, he dramatically u-turned on his party’s policy of free university tuition, once in coalition. 

I wish the our new Labour MPs well and will be keeping my posters and t shirts ready for when this current coalition of chaos implodes.

This blog was also posted on the Huffington Post 

 

 

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Politics

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5 More Ways to Survive being Disabled

Logos.jpgSome more useful ideas

6 Use or Loose

Use your previous skills to enhance what you can still do. I gave one example in the previous blog post about being organised and thinking ahead. Those were two skills I leant and enhanced throughout a career managing nursing homes and charities. I gained computer skills over 30 years ago and am still learning. I’ve taught others to use social media, basic spreadsheet knowledge and how to manage databases, all from my bed. 

My carers keep everything tidy and my bedroom has all my computer kit and books to hand. People are taken aback at first, but soon understand when I explain that lying in bed reduces my pain levels and enables me to do more.

7 It’s your pain

Only you know what you can and can’t do without being in pain. It’s your pain – no one else knows how bad it is. Pain is telling you something, it’s telling your body to stop. Listen to your body, learn what triggers your pain or muscle spasms. When your body says stop, take notice. 

Please, don’t be bullied by professionals who tell you differently or that you are not trying hard enough. It’s your body – not theirs. I know there is a theory of breaking though a pain barrier – but you are not an elite athlete!  Treat yourself and your body carefully. 

8 Learn who to ignore

Find a way of dealing with the idiots who will ask you stupid questions. For me this is difficult, I have a low idiot tolerance level. I’m also very good at thinking up an answer 5 minutes after I’ve turned away from the idiot in question. I’ve had senior doctors ask why I’m using a wheelchair, judt because they didn’t look at my notes properly. 

I have several different medical conditions which mean I need to use my chair all of the time. When I’m asked what’s wrong with me by a non-medical person, I usually quote the two main reasons, then say, ‘But there’s several others too…….’ the look on the other person’s face usually means I’m kind to them and say nothing more. However I have friends who will respond to that question with ‘………and why have you got such bad dress sense?’ It works for them, I’m not so brave. 

9 Ask for help

One thing that disabled people know lots about is disability. Whether it’s dealing with pain, how understanding how your local Social Services work or getting a good wheelchair. Through years of experience and learning the hard way – we have lots of knowledge and most of us are really happy to share it. It’s the same when choosing a GP or knowing which care agency actually cares. Don’t be afraid to ask. If we know we will tell you and if we don’t know the answer, we’ll probably know someone who will. 

Know the websites to use, Benefits and Work, for everything you need to know about DLA, ESA, PIP and more. Turn to Us, Benefits eligibility checker and great advice on where to get more help. Radar, the best site for finding out your rights.

10 Be an expert

Understand your condition and the effects it has on your body. Understand your medications too and learn about interactions. For some people being part a local group with a national organisation is brilliant. My friend Val who has MS really benefits from going to her local group and being part of the MS Society. You may just want to get a regular newsletter or magazine and know there is a helpline if you need it.

Know your legal rights – if you live in the U.K. – the Equality Act 2010 is the main legislation to understand. If you are in the US it’s the Americans with Disabilities Act 1990. 

If you are able, campaign in some way to change thinking and attitudes. I do and through that I’ve met a great bunch of people and we support each other too.

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The Bathroom Saga – Part 2

‘Twas on a Monday Morning……………..

This wonderful Flanders and Swann song seems to sum up everything that happened with actually getting my bathroom works completed!

I agreed with the contractor to have a Monday morning start as the work should only take three days. The bathroom was cleared of storage units, cleaning stuff and the cats litter tray.  I had woken early and although I wasn’t yet dressed, I was respectable enough for the contractors to arrive between 8 & 8.30am. By 9am I was feeling rather cross and phoned their office. I was told that I should have had a phone call on Friday. The Friday call should have explained that there had been a delay on a previous job and the workmen would not get to me till Tuesday. I was not happy. Later that day I was told the men would arrive ‘first thing’ on Wednesday. This was not looking good.

First thing on Wednesday morphed into lunch time. Eventually 2 men finally put in an  appearance. One spoke some English, the other very little. They began by laying a protective cover down over the walk-way into the bathroom. This was great for preventing dirt being traipsed everywhere. The cats however, were not impressed. Their paws stuck to the plastic. They spent the next few days walking around the edges. 

Soon the bathroom floor was ripped up and the preparation work began. Thursday morning started with the new radiator being installed. The cupboards were fixed to the wall. Finally my shower seat was moved and attached at the correct height. For some reason this last task turned out to be quite difficult. The adjustable legs were different lengths and one had to have a couple of inches sawn off. Eventually the seat was low enough for me to sit safely on it. 

The next job was sealing the holes between the floor and the skirting board. Then a special concrete-type underlay could put down. This stuff stank! The smell was very like that disgusting smell you get in male urinals when they have not been cleaned properly. Fresh air spray failed to get rid of the pungent aroma!

I landed up burning a heavily scented candle for several days. 

Whilst the underlay was being smoothed into place the loo had to be removed. Even after the loo was re-fixed we couldn’t use the bathroom until the floor had finished drying. Inconvenient to say the least!

The final task was the measuring of the floor area so that the flooring could be laid on Friday. When the sub-contractor arrived to fix the flooring in place, he told me that the previous days measurements were incorrect. What! How? He didn’t know – not his job!  The flooring he’d brought with him was not just not big enough to fit my bathroom. I was furious. Demanding, through clenched teeth, as to why he couldn’t just get some more that was the correct size? The answer to that was that the supplier was too far away for him to collect it. He was also booked into another job that afternoon. Also he didn’t work on weekends! I told him I expected him back first thing on Monday morning, to which he muttered something about a another booking. 

I tried to calm down before I phoned the main contractors. They did not understand why the subcontractor had left my flat. Thirty minutes later a very apologetic boss was on the phone to me. He was grovelling. He knew his firm had got things badly wrong. He told me there would be no charge for the radiator, which would save me some money. But also informed me that the fitter would not be back until Wednesday morning. I was glad about saving the money, but very annoyed I wouldn’t be having a shower until the following week.

I cannot easily have a stand-up wash, so had to resort to using baby wipes and dry shampoo to feel half decent. I chose not to go out anywhere either as I felt so self-conscious about not being able to have a shower.

I couldn’t wait for Wednesday to come! I was so relieved when the fitter arrived with the correct amount of flooring. Thankfully, the disgusting aroma had almost disappeared. The flooring was laid quickly and well. All I had to do now was wait 24 hours for the sealant to fully dry. 

When Thursday morning came, it was wonderful to be able to have a shower after 8 days without one! Having the warm water cascading over my body was bliss. Having clean hair was such a relief too. I was even able to shower alone, just needing help to get from the shower to my wheelchair. 

The other joy of getting the bathroom done was being able go get rid of the shower curtains I hated so much. I now have beautiful leafy curtains which tone well with the darker flecked flooring, deliberately chosen to reduce the visibility of marks or hair dye. Now that the flooring is correctly laid the shower water drains away quickly, longer leaving the floor like an ice rink. 

I’m so happy and relieved to have a beautiful almost new bathroom, which finally looks good and is safe to use.

 

 

 

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Everyday Life

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5 Ways to Survive Disability

Coming to terms with being disabled is never easy. As a disabled person, it hardest for you, but it can also be hard for family members to recognise the reality of your new life.

I am also aware that some disabled people never seem able accept the life they now have. They just don’t want to make that adjustment. All I can say is, only when you accept your disability will you be able to move forward and decide how you will live your life in the future. This what I have learnt so far:

1 Your life is not over

It is just  going to be different. You have to adjust, but you can and will find a way of living well and of still doing things you enjoy. Be open-minded – you will be surprised how much difference that will make to your future. 

As my partner had just reminded me – having fun is important. Try watching a movie at home with ice cream & popcorn. Why not go to a local cafe where you can taste a new dish? My favourite activity is a trip to an art gallery with a scrumptious tea afterwards. Find something fun to do at least once a month.

2 Beware the Myths

Someone will always tell you of a miracle cure – or say you haven’t prayed hard enough. I do not believe either of those statements. You will have your own religious or spiritual take on such advice. As a child I was taught “God does not give us burdens we cannot carry”. But that isn’t true for everyone either. (For the record I’m Jewish and do believe.) Finding a way to acknowledge the advice of others, without following it is a skill worth learning.  Be firm, to protect yourself.

3 Be Organised

Being disabled requires super organisation – plan ahead and save energy for the things that matter to you. People often marvel at what I manage to do within a day. Part of how I achieve that is by planning ahead and thinking though what I don’t need to do, so I can achieve the things that really matter to me. I use lists and reminders. I use my wheelchair to carry things from one part of my flat to another. I save energy as much as possible. Never stand when you can sit, never sit when you can lie down.

Getting dressed is tiring for me – so I never change clothes more than once a day and often not until I’m going out out. If someone thinks I’m lazy, that’s their opinion, I know differently. Putting clothes away and sorting laundry is even more exhausting, so that’s always a job for my carers. Little things can make a big difference.

4 Get some practical help

If you can get a good care package from your local council, go for it! It may take sometime to get everything to settle down, but persevere, it’s worth it in the long run. If that is not an option, a small amount of paid help of some sort will make life easier not just for you – but your family too. You might also be able to rent out a room in exchange for some care services. Explore options, be creative.

5 Having a purpose in life is important

Especially so when you are disabled. I see it as being both therapeutic and necessary. Maybe it’s writing a blog like this one. Maybe it’s sharing a skill. Find something that really matters to you. Even if you have multiple restrictions, by doing just one thing you will have achieved something important for yourself and for others.

I manage a two websites, four Facebook pages and three Twitter feeds, for local groups, all from my bed!! It doesn’t earn me any money, but for me what’s more important is I’m contributing to causes I believe in.

 

 

 

 

 

 

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Everyday Life, Hints & Tips

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The Bathroom Saga – Part 1

Before the real work can begin………

The old flooring

I moved into my lovely wheelchair adapted flat at the beginning of last year. It is a great flat to live in and I’m happy and settled here. Unfortunately, I quickly discovered very quickly that my bathroom needed new flooring and a proper shower seat. As a temporary measure I bought I stand-alone shower seat. But due to the dip where the shower drains away it was very unstable. I needed a fixed shower seat. The flooring problem should have been equally easy to fix. I knew that would need authorisation from a Occupational Therapist (OT) from my local council. I had already been very unimpressed by the way my transfer of care hours had been handled. When the OT finally visited I was not surprised to discover that she was very unhelpful.

Having been responsible for the re-fitting of bathrooms in several nursing homes, it was obvious to me that the flooring was one that had been discontinued over 10 years ago. The reason being that it didn’t wear well, was difficult to clean and was very slippery when worn. The OT would have known this. Her tactic was to imply that I was making a lot of fuss about needing new flooring. I had ‘managed’ for 2 months so it clearly wasn’t unsafe. This was despite telling her I had slipped and fallen. I also explained I now needed someone with whilst I showered. Another loss of independence. 

Eventually, she reluctantly agreed new flooring and a fixed shower seat were needed. It look another 3 months for her report to get emailed to the housing manager where I live. 

About two months later, a firm of contractors turned up to fit the new seat. The fitter was a qualified OT. Instantly he knew that the seat she had ordered was the wrong one for me! More delay. Another month went by before the new seat was delivered. The day it was due to be fitted I was too ill to get out of bed. So the fitters did measurements from my wheelchair. Somehow, these were wrong. When I first used the seat I quickly discovered my feet did not touch the ground. So it was still too unsafe for me to use! It was also not fully against the wall, meaning my bathroom storage unit no longer fitted under the shower curtains. 

By this point I was too emotionally exhausted to try and get it fixed. But, in the back of my mind, I had a plan. After another 4 months my housing officer finally got round to getting estimates for replacing the flooring. When the chosen contractor spoke to me he agreed to move the shower seat whilst the floor was being done. He is also fitting a new bathroom radiator for me. The current one is too small and the bathroom always feels cold. Two new cupboards will also be fitted to the wall. All for cash in hand! 

I’m so looking forward to getting this work done. 

Part 2 – to follow on completion.

 

 

 

 

 

 

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Everyday Life, Housing

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#CripTheVoteUK

Getting disabled people to vote

Crip the vote started in the US in February 2016 during the run-up to the last presidential campaign. It is a nonpartisan online movement activating and engaging disabled people on policies and practices important to the disability community. It is grounded in online conversations encouraging individual and collective action in the face of inequality, ableism, and oppression in all forms.

Their campaign was – and is –  high profile and has incentivised many disabled people to get involved in politics and vote for candidates whose views would best serve disabled people. Although that election is over the campaign continues. Activists are now looking to move into other forms of political participation.

Now Crip the vote has launched in the UK. Started by some campaigners from DPAC (Disabled People Against Cuts), it has had its own blog, and is on Twitter, Facebook and Instagram.

DPAC have organised or been involved in all the Direct Action protests against Austerity Cuts in the UK since 2010.  Their visibility for those of us who may be unable to be involved so publicly for whatever reason, has highlighted the inequalities faced by disabled people.

I’m proud to be part of #CripTheVoteUK. As my friend Dennis Queen said; “Disabled people are quite literally voting for our lives. We need ALL voters to know this is an emergency for thousands of disabled people and help us fight back.” 

You can read more about the campaign here.

Did you know both the United Nations and the UK’s Equality and Human Rights Commission, have condemned the UK government for many abuses against disabled people?

Did you know that at least 10,000 disabled people have died in the last 7 years (since 2010) within 6 weeks of being declared ‘Fit For Work’, and the government has ignored warnings from its own research about the impact of their regime? The next Labour Government has pledged to scrap these cruel tests.

Those two facts alone, should make any voter think hard about what sort of a country the UK has become under the last three Tory led governments. Don’t forget the LibDems were part of this too. 

This is why I’m voting Labour at this election. If you live in a constituency that is already a Labour seat or could become one, please join me. If you live in a seat held by a Tory or LibDem vote for the party who can most easily unseat the sitting MP.

Disabled people, our families and friends make up almost half the UK voting population. Think what a difference your votes could make? 

By voting for a Labour MP you could, quite literally, be saving the lives of disabled people.

A shorter version of this blog post has been published on the Huffington Post UK site, where I will be blogging regularly.

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Politics

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A card to prove you’re disabled

Access to venues without the hassle

Have you ever turned up to a theatre or exhibition and discovered you needed documentation to prove you were entitled to a discount?  I certainly have and am sure so have most disabled people. 

Now that problem is solved by Access Card.

This card verifies that you are disabled and in most cases are in receipt of a disability benefit such as DLA or PIP. If you do not get these benefits there is plenty of space to explain your disabilities on the form. It is also possible to download a paper copy of the form and send it in by post.

I’ve just filled out my application on-line and it was relatively easy.  Though I did have some difficulties. There seemed to be no way of moving from one box to the next to input my name and address details. I had to keeping hitting the next button at the bottom of the page which was annoying.

You will need to have a copy of your benefit letter, a copy of some photo ID and a separate photo for use on your card. All of there were easy to upload on the the Access Card site. 

Now I have to wait for my card and I’ll update this post when it arrives and I’ve used it.

 

 

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Everyday Life, Hints & Tips

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