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Archive for the ‘Everyday Life’ Category

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

Thank Goodness for the NHS

A couple of weeks ago I booked to see my GP. I had a very swollen right foot. This had started about 2 weeks beforehand. It was not improving even when I was sitting in bed with my feet elevated.

My leg was slightly swollen, but nowhere near as much as my foot. I also had some discolouration. Thankfully I had no extra pain. 

Having examined me carefully my GP was concerned that I might have a Deep Vein Thrombosis.  My only previous history of DVT was 40yrs ago, when I was on the pill. My GP was also concerned that I may be at risk of Pulmonary Embolism, a clot of blood on my lungs. I had been getting increasingly breathless – though I did not feel it was any worse than when she saw me in April.

But, being as thorough as ever, my GP advised me to go to my local Accident and Emergency Department ASAP. She printed off all my medical notes to take with me. 

So, less than an hour later I was at a large London hospital. I was checked in at the desk immediately and only had to wait 10 more minutes to give all my details to the clerk.  At this point I will admit to feeling slightly scared, I really don’t want or need another medical issue or diagnosis.

90 minutes later I was seen by a highly experienced professional Triage Nurse called Natalie. My BP was raised at 186/92, my pulse was 124 and my oxygen saturation levels were 92. Both of the latter results are fairly usual for me. My severely reduced lung function had at least, not deteriorated.

Natalie quickly did an ECG – electrocardiograph. This did not show any abnormal rhythms. Despite everything being ok, Natalie made the decision to take me round to the major treatment area to be seen by a doctor.

Within 5 minutes I was seen by Dr Elle. She quickly put a cannula in my hand and took bloods from me. The main test I was going to have was a d-dimer which can show if there are high levels of fibrin in blood. This can give a good indication of the likelihood of having a blood clot in my lungs or leg. 

The results would take an hour to come through, so I settled down to read my kindle again.  Dr Elle had explained to me that the hospital protocol varied, depending on my results. If my d-dimer was raised, I would have an immediate CT scan and possibly be admitted. If the results were ok, I would be sent home with a short course of blood thinning medication. I would then return for an ultrasound scan of my leg after the weekend.

Thankfully my results were negative – whew!! I was so relieved!!

I went home, rested and took my medication over the weekend. I returned to the hospital on Monday for my scan. That too was clear.

Within another week the swelling on my foot was greatly reduced. What caused the swelling remains a mystery.

I couldn’t help but be grateful for all the wonderful care I received. Whilst Dr Elle was fairly sure I had nothing seriously wrong, I was treated as though I did. The reassurance of knowing I would have those tests was priceless. Yet it is so often something that we in the UK take for granted. 

We still have a great NHS despite the efforts of this ghastly government and its predecessors attempts to destroy it.

When I hear of those in the US who cannot get good health care or the level of health insurance they need, it makes me even more determined to campaign to keep our NHS free at the point of use.

 

A Very Reasonable Adjustment

Jared O’Mara MP

The Speaker of the House of Commons ruled recently that male MPs need not wear a tie when in the Chamber. There has been much fuss made in various newspapers about this. As well as ill-informed comments by MPs themselves. Many correspondents to letters pages seem to regard it as a lowering of standards. 

The House of Commons is a strange and at times, eccentric place of work, with its old traditions and rules. All MPs still have a ribbon attached to their coat hook for hanging a sword on. Less than 20 years ago MPs still had a wear a collapsable top hat if they wanted to raise a point of order. MPs are also never referred to in the Chamber by their own name. My MP, for instance, is the Honourable Member for  Vauxhall. MPs who are members of the Privy Council or have a knighthood are addressed as Right Honourable. 

Such old style forms of address hardly sit well within a 21st century House of Commons. Many new MPs find themselves baffled by the procedures and customs. They do not make for a welcoming work environment. Some have likened it to going to Public School for the first time or even arriving at Hogwarts. 

The Speaker, John Bercow gave no specific reason for his decision about ties other than it was for him as Speaker to decide what was “seemly and proper”. He continued saying that in his view; “a tie was no longer an essential part of business attire”.

But there is another story behind this announcement. That of making a “Reasonable Adjustment” at work for disabled people, as required by the Equality Act 2010. The new Labour MP for Sheffield Hallam, Jared 0’Mara has cerebral palsy and is unable to do up buttons on a shirt or fasten a tie.  He had previously indicated that he may need to ask for such an adjustment. 

John Bercow, like any manager in a workplace has had to make a sensible and pragmatic decision. And not wanting to cause embarrassment to a new MP who has a disability, he made a general announcement. Would it have been better to give a more specific reason? I think not. As disabled people we do not what to be  called out for our differences. But we do need employers to make suitable and reasonable adjustments so we can do our jobs easily and well. 

This is precisely what John Bercow has done. He has also handled his decision with tact and sensitivity. I wish all employers would behave in the same way. 

Many City firms, still require their female staff to wear skirts and high heeled shoes to work. This sexist and outdated attitude should be long gone. It was at the end of the 1960’s that the then Speaker Dr Horace King decreed that women could wear trousers in the House of Commons.

Surely this too, is a change that all employers should be making? Women should have choice in what they wear to work.

The law requires reasonable adjustments for disabled people. I can see no reason to restrict dress codes just to those of us that need them, they should be equally valid for all. 

This post first appeared in my Blog on the Huffington Post UK site, where more of my writing can be found.

The Phone Call

I have been fighting for almost 18 months to get my care package reinstated. According to UK law, if someone moves from one area to another their care package should automatically move with them. This gives people the security of knowing that they will not have to wait for a re-assessment and will continue to get enough care. 

The Care Act 2014 states that the new Local Authority has to continue with a care package for a period of at least 3 months before reviewing. So when I knew I was going to move to my current flat, I made the required phone calls. As I was moving from one Labour run Council to another I expected the process to be simple. How wrong I was.

Whilst my phone calls were logged in my new borough I was told that they they needed three months notice of a move. I was also told that they expected my old borough to pay for my care for the first three months. 

When moving within social housing as I was, it is unusual to get a months notice as I did. Very often a move has to be done within 7-14 days. My old borough, quite rightly, refused to pay for my care once I moved. 

Several very unhelpful phone calls happened. During one, I was told that as I had chosen to move I had no automatic entitlement to care. Explaining that I had moved area after almost 9 years of waiting to get an adapted flat didn’t seem to count. Eventually I was seen by an OT – occupational therapist and a social worker. The OT arranged to get my bathroom adaptations carried out, eventually. Click here and here for the saga.

The SW – social worker demanded lots of letters from all the medical professionals I had seen recently. Then I was told be they wouldn’t accept anything from my current GP as I was still registered with the GP where I used to live. They did not accept evidence from an out of borough GP. I was unable to change GP at that time as I was waiting for spinal surgery and needed continuity of care. 

I did give them permission to contact that GP, which they very reluctantly said they would do. I was horrified to get an email saying my GP informed them I did not need care. When I visited my GP she told me that no such request had been made and no such letter sent. She actually wrote a letter whilst I was with her completely supporting my need for a care package. The letter also stated no previous letter had been sent.

The SW used the “evidence” of the letter she claimed my GP had sent to refuse me care. I asked for a copy of that letter. Of course, I was refused it. I was told I had to ask my GP for a copy. Yes, a copy of a letter that did not exist! How bizarre is that.

Eventually I decided to contact my MP to ask her for help. She was quite horrified at what had happened to me. We made arrangements to meet so I could give her all my documents. Unfortunately shortly afterwards she suffered a family bereavement, so work on my case was delayed. 

Once my MP was back at work she was soon in contact with the Director of Social Services. I now have an email accepting I’m entitled to care. 

But when? How soon? I was contacted in April by another SW. I supplied him with my new GP details and the latest letter I had from my Orthopaedic team. Then heard nothing. 

My MP contacted the Director of Social Services again once she was re-elected. I had another email today – accepting they have done nothing since the April phone call. A response my MP has described as “pathetic!”  Evidently the letter is “too out of date” to be used. I only see that consultant yearly!

I also had a phone call from yet another SW today. It came when I had a neighbour here and I asked the SW to call back at a specified time. Surprisingly she agreed. It is that call which is the headline of this blog.

I was actually shocked that she called back at the agreed time. She seemed professional and wanted to hear what I had to say. But as the call progressed, I became more and more anxious. She constantly cross-questioned why I needed certain treatments. She couldn’t seen to understand that the surgery I had last year won’t enable me to walk around. (It was done to relive a trapped nerve and had had no impact on my back, neck or shoulder pain.) I knew this would be the case and have come to terms with that.

But, every time I’m questioned about why I can’t have this treatment or that operation it puts both my mind and body in a spin. Should I stop accepting how I am? What if there is some miracle surgery that will “cure” me? Have I not seen the right Consultants? I’m left feeling dazed and confused. It has taken me a long time – almost 10 years to get to the acceptance I now have.

I’ve learnt to live with my limitations and mange to enjoy what I can do rather than pining for what will never be possible. What right does anyone have to disrupt my psychological equilibrium? 

My physical reaction from the phone call was all the effects and symptoms of IBS. Several hours later I’m still feeling sick and my stomach continues to gripe. I’m just glad I don’t have to go out tomorrow. 

The next stage of getting assessed depends on the letter I get after I see my spinal consultant on Friday. Officially I shouldn’t even be seen much later this year. But because of my circumstances the surgeon has made an exception and agreed to see me. 

Update to follow……………

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.

 

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.

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.

 

 

 

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.

 

 

 

 

 

 

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.

 

 

 

 

 

 

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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