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Posts tagged ‘Disability’

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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Everyday Life, Politics

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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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Everyday Life, Guest Post

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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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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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Mental Health Awareness Week

The Irony of Randomness

This is the week organisations and employers are encouraged to make sure they have structures in place to support staff who may have mental health issues.

It is also a week for some to feel able to talk about their own mental health diagnosis. Another way of marking the week, as many election candidates have done, it to look at ways our NHS should be doing more to prevent young people going into crisis. 

But for me, this week has been one of stress and worry, which could easily be resolved. Under the cruel Tories, I and so many disabled people continue to suffer unnecessarily. I receive DLA and was given an indefinite award 8 years ago. I should not need to be re-assessed. But then the rules changed. Everyone, no matter what their condition, has to be checked up on. This includes people who were born with severe mental and physical disabilities who cannot do anything for themselves. 

Two weeks ago, the dreaded envelope dropped through my letter box. The DWP require me to complete a 24 page form asking asinine questions about my health and what I can and cannot do. This week I have to return it. The irony and randomness of having to so during Mental Health Awareness Week is not lost one me.

Luckily, I’ve recently registered with a new GP and seen a new Consultant so my ‘everything you need to know’ A4 sheet is up to date with diagnoses and medication. I have also got a supporting letter from a Nurse who knows me well. I have warned my GP and consultant they will most likely be contacted.

I have 5 long term conditions, none of which will ever improve. I understand and accept that. But the DWP tick box managers clearly do not. Every 2-3 years they send me another form to complete, with questions on it that bear little relation to my everyday life. Can I lift or move a box? Can I put a pen in a top pocket? Can I touch the top of my head? 

Those of us with arthritic conditions, blood disorders or neurological symptoms, my friends with MS or Parkinson’s, all of us have to  go through this stressful process. It is totally unnecessary. The DWP could, much more cheaply, employ Doctors or specialist Nurses  to paper-check on-going claims. This would ensure those of us who can never return to full health, will retain our allowances. People who may have been debilitated after an injury or by an illness which is curable, would also be assessed and either be transferred to long term benefits or supported back to work.

The same could be true for the many people I know with mental health problems. Some people with a mental health diagnosis will never be stable enough to hold down a job. Forcing then to try and do so is most likely to end up exacerbating their already fragile mental health. 

So this week, I’m merely surviving. I want to thrive and focus on my writing projects, and doing some cyber campaigning for the election. But that’s not possible. I have the Sword of Damocles hanging over me. Will the money I need to live on be cut? Will I keep my car, which is my absolute life line? These are the thoughts that occupy my waking time and stop me sleeping at night. 

What would enable me to thrive? An questionnaire checking up to make sure I have enough support and care hours? That might help ensure I can live something approaching a normal life. The questionnaire could check if I’m socially isolated. Thankfully I’m not, but so many people are. It could also ask if my home is safe to live in, am I free from harassment, and if I can afford to keep warm in winter? 

All of those things would improve my life. Filling out a form to tell someone, with less qualifications than me, the obvious only causes me and all other disabled people stress and distress. 

Maybe next year the focus of the campaign should be to get politicians to understand how to help us thrive and not be burdened with having to just survive. 

 

 

 

 

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Everyday Life, Medical

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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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Everyday Life, Politics

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