Always interesting, often different

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.

 

 

 

 

 

 

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 heartbreaking blog post from Kitty S Jones, showing the cruelty and fear of the current UK sanctions regime against disabled and sick people.
Kitty runs both a blog and a Facebook Page.

Politics and Insights

Salena Hannah (Photo: Adam Sorenson)

A woman who suffered a heart attack during a job centre in-work progression interview has said she was too scared to get up and leave to get medical help as she was afraid of ­losing her benefits. Salena Hannah, who works part-time, says that she had the attack during her appointment, but was ignored by the “callous” job centre interviewer.

She explained: “I had been suffering with chest pains for about two weeks and took a couple of sprays of GTN spray, to help with my angina, before I walked in to meet my interviewer.

“My job is under 16 hours, so I am forced to attend regular meetings, or my benefits might be stopped.

“I was feeling some really bad pains in my chest and I told her at least two or three times that I was in agony, but she was just so callous, she just kept…

View original post 1,674 more words

#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 continuesActivists 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.

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.

 

 

Many years ago, in what almost seems like another life, I encountered Ian Brady. In 1965 he, together with Myra Hindley were convicted of murdering 5 children. She died 15 years ago, Brady died yesterday.

At the time of the murders the pair were dubbed the Moors Murderers. A name that is still used, as the bodies of the children were buried on the Yorkshire Moors. I was just 10 at the time, but remember the newspaper coverage.

Little did I ever imagine that I would meet Myra Hindley or encounter Brady. My meeting with Myra, is still bound by client confidentiality. I met her in connection with a client who lived on the same prison wing. My client is still alive and I can say no more of my meeting.

My encounter with Brady was different. The client I was seeing is now dead and whilst I still will not name them, I can tell a little of their story.

My client was incarcerated in Ashworth Special Hospital in Merseyside. Brady was also there and happened to be on the same unit.  My role was to help a Mental Health Tribunal decide if my client should be released on licence. It was an unusual case, for my client was transsexual. They had been kept in the Special Hospital system purely because of their diagnosis. 

Jacky, as I will call her, lived in her room as a women. She did not mix with the other inmates whist she dressed that way. But had to dress in male/androgynous clothes for communal meal times. 

Back then, I was able bodied, and had also visited clients in Broadmoor, another Special Hospital. So I knew what to expect and was aware I would be escorted, except when I was with my client. I knew from Jacky and the newspapers that Brady was on the same ward. I certainly hoped I would not have to interact with him in any way. Fortunately I did not need to, as Jacky voluntarily spent all of her free time in her own room. 

On my first visit, I went though all the usual security and was escorted across to the ward. I met and spoke with staff and was then taken to see Jacky. She was delighted to met me after writing and phoning me for over a year. To get to Jacky’s room I was escorted through a locked sitting area. I was hyper-vigilant as always in those environments. So I soon noticed a very thin man with penetrating eyes staring at me as I walked past. Only when I got through the gate to the rooms did  my nurse colleague tell me the man who stared so hard at me was Brady.

My time with Jacky was positive. I was impressed by how she had coped with recent cancer surgery. Even though she was left with an appalling scar. She kindly made me tea. Part way through our session I realised I needed the loo. I asked Jacky, where the nearest loo was. She told me that I would need to ring for one of the staff. The only women’s toilets were the other side of the locked sitting area.  So, with no other option, I used the bell and asked to be escorted back to the women’s room. Each time I walked across the sitting area, I could feel I was being stared at.  The other inmates seemed doped on medication and ignored me. But I could almost feel the penetrating eyes of this killer, staring right through me. It was very unnerving. 

I had met other violent killers and murderers. Sometimes I felt uncomfortable being with them. This seemed very different. Why? Was it because he had killed children? It was obvious that he like the other inmates were heavily medicated. I was never really in any danger. I had been on prison wings before. But yet I dreaded that walk. I still can’t say why. All I know what that on future visits to Cardinal Ward I used the women’s room before I started work. I also didn’t drink any more tea with Jacky. It wasn’t till after her release that I told her the reason.

Sadly Jacky died a few years after her release. But she had achieved the surgery she so wanted and found some happiness. As for Brady, he will not be mourned. Some are angry that he took secrets with him. All I know is that he seemed to be the personification of evil.

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. 

 

 

 

 

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. 

 

Medication and more

6 Know your meds

Understand what medication you have been prescribed. Know their names and how they work. Also be aware of both the generic (scientific) and proprietary (Pharmaceutical or trade) names.

There are lots of online resources. I find this one the bestYou can also try this NHS site which gives more of an overall view. 

By understanding what your medication does, you are also able to be alert to side effects. But beware – these can sound very scary. Also, not everyone suffers from these side effects and you certainly won’t get all of them. If you are someone who is aware that you may be easily influenced, give the information leaflet to a close friend or family member who can check side effects for you if you are worried.

7 Always report drug side effects

If you are having side effects from your medication, note them down. Use your notes when you go back to see your GP. If you feel you are getting more side effects than benefits from a medication – don’t be afraid to ask if you can try something different.  

The same medication can work differently on different people. Just because someone you know had side effects from a medication doesn’t mean you will too. 

8 Don’t be afraid to say no!

If you really cannot cope with the side effects from a medication, it is your right to say if you no longer want to take that medication. You should always discuss this with your GP first. But ultimately, it’s your body and your choice.

One of the most common drugs prescribed in the UK are statins. They are very cheap, and are given to patients who have raised cholesterol. One million people were prescribed statins in 2011

But thousands of people also suffer side effects from statins. The most common of these side effects are muscle pain and cramps. There is also a risk that statins can increase your chances of getting type 2 diabetes. Statins are often prescribed to reduce a risk of heart attacks caused by high cholesterol. Opinion on statins is divided, even between doctors themselves. 

My own, non-statistical, view talking to friends and family members who have taken statins, is that the side effects some people experience are considerably worse than the risk involved by not taking statins. 

That is my personal choice. If you need to make a decision about statins, or any other medication please discuss your options with your GP first. 

9 Check about supplements 

Many of us now take vitamin and other supplements to improve our health. But did you know they can interact with prescribed medication?

Check out what you are taking or considering buying with your GP. The same advice applies if you are seeing a hospital consultant. Please also tell the doctors or nurses if you are going to have investigations or surgery. 

10 Not all GPs or practices are good

Sometimes things go wrong. Try and resolve you concerns with the GP themselves. If your concern is about one of the reception staff, speak to the practice manager. Your complaint may help them deal with an ongoing issue. 

Where I previously lived in West London, there was an arrangement for my the nearest Chemist to pick up scripts from my GP’s surgery at least once a day. Usually this system worked well. I would order my meds on line and the script would be at the Chemist two days later. The following day I could have my meds delivered. 

However on several occasions prescriptions went missing or couldn’t be found. If I phoned to check what happening there was one particular receptionist who used to get very angry and defensive. On two separate occasions she accused me of lying about what the Chemist had said to me. 

The first time I just thought she was having a bad day. But on the second occasion I spoke to the Practice Manager. It turned out there were some ongoing issues with this particular staff member. Not only was the prescription collection system improved but the incident was used to try and help the Receptionist’s skills training. I stayed with that practice till I moved

Learn about the care other GP practices give disabled people. If you find you have chosen the wrong GP – find a better one. Poor care is not acceptable and you have a right to change your GP.

 

Carol Midgley’s Comment article in The Times today strikes an arrogant and unrealistic tone. Her assumption that the new NHS campaign #endpjparalysis is good for everyone is not correct or helpful. 

I fully understand the need for post-operative patients to begin to mobilise as quickly as possible to prevent DVT. But the presumption that every NHS patient should be up and dressed during their time in hospital is not realistic. Who is going to help those for are too frail or ill to do this for themselves? 

I’ve had 5 hospital admissions in the last 4 years. Each time I have needed help from nurses to get dressed. Many elderly and frail patients do not even get help to eat their meals in hospital. Who is going to help those people to get dressed?  

19% of the UK population is disabled in some way. We are also likely to make up the majority of patients on any ward. Another article in the same paper talked about the rising number of bed-blocking patients. The reason: there was no social care available for vulnerable people. That care is needed precisely because people cannot do basic tasks for themselves. Forcing all patients to get dressed gives a false impression to Social Workers of how fit people actually are. 

I’ve had Social Workers seeing me at home, dressed, but lying on my bed. They then presume that I’m capable of cooking a meal without help, or doing a myriad of other household tasks. I have most likely used up all my energy for the day, getting that far. Because they see me looking ‘respectable’ a whole set of unrealistic expectations appear in their thinking. These become intrenched and are difficult if not impossible to dispel.

Carol’s final point about needing to wear a bra to feel “fully functional” struck me as particularly ludicrous. Lots of disabled women find it difficult, if not impossible to wear a bra. This is especially true for those of us with arm or spinal problems. Those of us who are fortunate enough to be able to work in some way, may not have the choice to dress as she does. So, Carol, next time please check your ability privilege, before making your judgements.

 

 

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