Disability legislation made easy

Sylvia Rose explains some key legal points about disabilities rights.

It’s tough having a long term illness, impairment or disability, and even tougher in these times of austerity cuts. But something that cheers me up is knowing that there is legislation that supports our disability rights, in various ways. And knowing about it can really help. In theory at least, the law is on our side.

First and most important is the Human Rights Act 1998. Under this, disability is a “protected characteristic”, which makes it illegal to discriminate against anyone because of their disability. This is fundamental legislation that underpins our rights, and can come in handy in all sorts of circumstances.

Next comes the Equality Act 2010, which incorporated all the provisions of the Disability Discrimination Act 1995.  Amongst other things, it makes it illegal for providers of goods and services to give a lesser service to someone because of their disability, unless they have good reason. So, anyone with a “substantial and enduring disability” can make a reasonable request for a service provision to be varied in order to meet their specific needs, and if the provider refuses and is challenged, it is up to them to then justify why their refusal is reasonable. So, if you have mobility difficulties and need to borrow a wheelchair to get round a large supermarket, that might be a reasonable request. If you’re asking for the provision of one to get around a public park, they might say, bring your own.
Incidentally, provision of goods and services can also apply to Pagan events, and there doesn’t need to be money involved. Anyone who is running a Pagan event or ritual that is open to the public is responsible under this and other legislation, and can potentially be sued. (Many Pagans would be shocked to know this).
This Act also puts a duty on local authorities to promote the rights of people with disabilities.

Then there’s the Care Act 2014, which gives adults the right to an assessment of their care needs by their local authority – i.e. by adult social care social workers. If they are found to have “eligible needs” due to either a physical or a mental condition, a care plan must be drawn up of how these needs will be met. This can include the provision of services direct to the person, or direct payments to them for them to arrange and pay for these services themselves.
If the person has a carer, that carer is also entitled to an assessment of their own needs for support.

Finally, if a person with disabilities has children, and due to their disability they struggle to care for them, then under section 17 of the Children’s Act 1989 those children could be deemed “children in need” and the local authority children’s services department would have a duty to provide support and help, to ensure those children are not disadvantaged compared to other children. This could be financial help, respite care, or funding of childminding or whatever would help. (This does not mean that the person would be assessed as an inadequate parent.)

And of course there’s lots more: these are just the headline Acts. Some is decided by case law or government guidance; some is down to what the local authority can actually afford when it balances these requirements against all the other demands on it. But I think it’s good to know what the rules are.
As I write this, I can hear people saying, yes that’s all very well, but I couldn’t afford a lawyer, or don’t have the energy, to challenge breaches of it. Well, there are several answers to that, as well as that you have my great sympathy. One is that there are various disability organisations that can advise you, and sometimes even pursue a case on your behalf. These tend to be related to the specific illness or disability in question. Another is that, in these times of legal aid cutbacks courts or tribunals are increasingly sympathetic to people conducting their own cases without legal help – you’d just need to have done some basic research first, and maybe bring a friend along for support.
And lastly, there is the power of threat. It works, but it helps knowing your rights first. Try suggesting that you will launch a formal complaint to their organisation, or write to your MP, or even sue. Then drop in exactly which Act you are planning to sue them under. It’s remarkable how it can focus people’s minds. My favourite helpfully non-confrontational phrase is “I wouldn’t want to have to resort to legislation, but….”.  Which is a polite way of reminding others that these laws exist.

You’re not being difficult or demanding. You didn’t choose to have these extra needs.These laws are a fundamental part of living in a civilised society, and are there to be used.

World Mental Health Day and further musings.

So, today is World Mental Health Day and we were going to make a HUGE deal out of it but, as is typical, we all seem to be in low function mode right now. It’s a bit of a daft time of year for this sort of thing really… Most people who suffer with mental health conditions in this country notice a marked difference in their mood when the days start to darken… So the chances of us being productive at this time of year are much slimmer than in, say, May or June…

You may have noticed that we’ve been a bit quieter and if you were with us last year, you’ll probably have noticed it then too… The team is made up of disabled people and so, we made the decision very early on that we would not try to fight this and would, instead, go with the flow. Therefore, we’re going into hibernation mode!

Don’t worry! We’re not completely gone, we’re just not going to be working much until the Spring comes. We’re still here if you need us and we hope that you can join in our conversations in the support group and will still feel confident in coming to us if you need our support but there will be slow progress in our usual work for the next few months.

We hope to see you at our festival in a few weeks though, as that is definitely still going on!

On a more personal note, you may have noticed that i’m being quieter than usual… Some of you may have even noticed why! This time of year always has a bizarre effect on me… I tend to be a little more… Difficult, let’s say difficult, for the sake of being polite… I’m a little more difficult at this time of year and so i try to take myself out of situations where i may cause offence or upset… Well… That is… I do when i start noticing that i’m doing it… Which is usually after i’ve caused a bit of trouble… And it seems i’ve come to this point now! So, with this in mind, i’ll see you on the other side of this… Whatever it is… And i sincerely hope i see none of you during it! 😉

Stay safe, be blessed and much love!

xXx Debi xXx

Finding new ways to be accessible

Nimue Brown writes about new ideas from the Pagan Federation Disabilities team

The online disabilities events were set up more than a year ago to provide a way for people who can’t get to events to get some of the benefits those spaces offer. There are lots of reasons that public events aren’t viable for many Pagans – access is not just an issue at the venue, but it’s an issue for getting to the venue. For some people, pain and fatigue make events too draining to contemplate. For people with anxiety issues, public gatherings can be just too much, and for folk who are not neuro-typical, big, busy, noisy spaces can be impossible. The list goes on. Sometimes it isn’t enough to adapt existing spaces to accommodate needs. Sometimes you have to build a whole new space.

Poverty is also a real barrier to attending events, and it is an appalling truth that disability is very likely to put you in poverty.

So, online events became a thing, with speakers, and subtitles and free access, and it’s been good. We’ve just discovered a way to take this forward and include more people in the festivals.

Not everyone can record videos. There are all kinds of reasons that might stop a person talking to a camera for five to ten minutes. We’re going to find readers to present pieces for people who, for whatever reason, can’t make their own video. There will be a round of this for the Samhain festival, and then we really want to open things out for midwinter.

Midwinter will be a bardic gathering this year, and we’re inviting people to submit poetry, short stories and songs. If you aren’t able to read or perform yourself, then you can send things in and we’ll find someone to do it for you. Please get in early so that we have time to find readers and film them. I’m also offering to put a poem to music for the event – it will need to come in by early December, and I can probably only do one, so if there are a few I will go with whatever I think I have the best shot at making work.

Email disabilities.web@paganfederation.co.uk if you’ve a poem that might be set, or anything you want read, or let me know if you’ve any videos you’d like to share. we’re looking for Pagan content, first and foremost. Seasonal is nice, but not essential, and if you want to use your bardic skills to raise a disabilities issue – that’s always welcome.

 

Future plans from the Disabilities Team!

The festivals began as a way to reach out to the disabled within the community but it went so much further than that by reaching out to not only the disabled but carers, families, people with strict working hours so that anyone, even those who find it easy to attend regular festivals, wanted to be a part of what we created. This far exceeded our expectations.

We wanted to bring a small part of the community to those who felt like they were on the inside looking out at the world and what happened was, rather than bringing you outside or bringing the outside in, we just broke down those walls and now everyone is together and a part of it… Whatever it is! Even we still don’t know!

We can’t tell you all of our plans for the future as we don’t want to get your hopes up for things that may not be possible BUT we can confirm that a retreat is in the discussion stages, as are plans to fill the spaces between our quarterly festivals.

We’re looking into opening our own team shop to bring you some amazing work from our resident artist, Carl, and Batty Nan and there are big plans for other resources that we hope will engage you, inspire you and energise you all!

Part of this, is to move the Online Festivals on to the main Pagan Federation page and to expand them so we hope you will join us there and continue to support us in our work! 🙂

https://www.facebook.com/paganfederation/

Regards and Blessings

The PF Disabilities Team

 

A Healing Call

A guest post from Potia Pitchford about her new, virtual healing circle.

Over the years I’ve felt the need to do something of a healing nature. There have also been times I’ve needed some healing support myself. Most of the time what I have done has been as an individual. I’ve prayed; dedicated and lit candles; developed and carried out healing spells; chanted and sung; sent out distance healing using Reiki; visited people in hospital and given healing in the form of Reiki and similar types of spiritual healing; and I’ve asked for some of these for myself from people I know that also do forms of spiritual healing.

I have a whiteboard hung on the wall by my shrine on it are the names of people I know of that have asked for healing either directly or via a trusted loved one. When I sit at meals I look across at this whiteboard so I am reminded daily of those people.  Even if only briefly I pray for their well-being, when things are quieter I sit beside my shrine,focus my mind and send out healing energies.

I’m not medically trained. I’m not trained in any of the many and varied healing and associated professions and I’ve never been called to do that sort of vital work. What I can offer, what I do, can not replace good medical care and expertise. What I offer is something that can support the heart and soul, something that helps with feeling loved, feeling cared for and supported all of which aids physical healing.

Gradually I have felt the need to do more and a few months ago I was inspired to do a full moon healing ritual.  I put a post on Facebook about a day before I did it in case anyone wanted to request healing and I was surprised at the number of people that asked me to include them.  But still I felt I needed to do something more. I felt pushed, prodded, urged to set up some form of virtual healing group, something that would send out healing more regularly.  I mused on ideas for a while and asked in a couple of Facebook groups if anyone would be interested in joining some form of distance healing circle.  I got replies from a few interested people. I bounced my ideas around with a few of those, some of whom are, or have been, involved in other healing groups. I wanted something which was open to those of any type of Pagan and Heathen path to join but that would send healing out to those of any faith who requested it.  I wanted something that didn’t restrict how healing was done or sent, other than it would be virtual. I wanted something that had a central hub that requests to join and requests for healing went through. And I wanted something that had the potential to grow.

In May this year I decided to set a virtual Pagan Healing Circle up and I think this is something that can grow. The group is still young but already there are close to a dozen individuals who have joined me in this circle.

Healing requests come to me on a dedicated email address of paganhealingcircle@gmail.com or via Facebook. I’m cautious with accepting requests.  Consent of the individual the healing is to go it is vital so ideally the requests need to come from the individuals themselves.  There are always cases where that is not possible though.  If the healing is for a child or for someone unable to give consent themselves then we trust the parent, guardian or carer of that person.  If the healing is for a beloved animal companion (hasn’t happened yet but we are very open to that possibility) then the consent would come from the person who care for that the animal companion.  Sometimes healing requests come via a third party, if that is the case I confirm that the individual themselves is aware of this and agrees to the healing being sent.  This may sound over the top to some reading this, I know  people who say if you send healing with good intentions it’s fine.  But I have known people who have become upset and angry when they have discovered someone sending healing being sent to them without their permission.  I also know people who are very sensitive to incoming energies and if they do not know something is being sent to them it can cause them problems.  For these reasons I strongly believe that consent of the individual concerned wherever possible is very important!

Once I receive requests I then send them out to the rest of the circle and make a note of what date they are sent round in a little notebook I have. The current plan is that requests stay active for a month unless we get follow-up requests or feedback of some kind asking us to keep sending. A minimum of a first name and what the healing is for is asked for although more information such as the approximate location of the individual is also useful. If the request comes via email I do not circulate the entire email just the essential information to preserve as much privacy as possible while still providing support and healing.

Some of those we send healing to have been on the list since the beginning and have chronic health conditions, sometimes multiple conditions.  We are not expecting to “cure” situations like this, we are not miracle workers although we might like to be.  We seek to help, to provide support and healing energy boosts.  In return we ask for a little feedback, this helps us target our efforts to what is causing the most problems for that period of time and also helps us feel better connected to the person we are sending healing too, it helps build a relationship. Feedback also helps us feel valued and it’s always good to feel valued.  Some people request healing for short term illnesses or injuries and knowing that is coming to them often helps them improve more quickly than might be expected. We also sometimes ask for healing ourselves. Several of us have very personal understandings of chronic health conditions, we are wounded healers and circumstances in our lives can mean it is us who need the additional healing boosts as well as others that have requested healing from us.

If you would like to join this virtual circle of healers or wish to request some healing please contact me at paganhealingcircle@gmail.com

Resilience

by Becky Dowley

If, like me, you have been nurturing seedlings in a greenhouse or on a windowsill throughout Imbolc and Beltane, you will be glad when midsummer is upon us. Then you can stand back and let your seedlings stand on their own. You will have got to know their strengths and weaknesses and their individuality, having provided them with soil, water and warmth. There comes a day when they have to be strong enough and resilient enough to be planted out and left to grow and develop.

We humans are the same. If we are lucky enough to be nurtured in supportive surroundings we too can be encouraged into the world to grow and develop. If we have a disability or poor health, we may have extra needs. We may have to have someone there to assist us. In the case of autism, which I have, we might prefer to do things alone and not know when we need help.
What we must do is develop resilience. Resilience grows out of experience from knowing that we can cope, especially if we are supported.

Just as when our seedlings are tossed about by the wind and rain, sometimes we can feel as if we are being battered, bent and shaken by life. This can seem relentless and never ending. Our tolerance, strength and courage can be tested beyond limits. We might sometimes question “why me?” or “why now?” and feel as if we cannot go on. We might question where difficult events or things that test us fit into the greater plan. Disability and illness can be isolating and it is important that we surround ourselves by people who can encourage and support us.

As I have been nurturing my seedlings this Spring I have been grieving the loss of my younger brother. Nearly two years my junior he was funny, handsome, clever and a family man. He is interwoven with my life from when I can remember him being in his pram, from when he was a tiny little boy with big brown eyes and a coat that was too big for him. He died in February after a brave fight. I was with him when he died as the warm sun flooded in the window and I spoke gentle words in his ear to comfort him on his way. His wife and I held his hands and his friends and family gathered to support him as he set off on his last journey.

My resilience was tested. I had lost my mum to the same illness four years previously. I had lost my baby daughter, my father. Why them? I felt so alone and with my mum, my dad and my brother gone I felt bereft and the only one left.

My autism makes it hard for me to express my emotions and during this spring there have been times when I have been overwhelmed by my sadness, my helplessness and my anger. It’s been during these occasions when I have felt so vulnerable, weak and low. People with autism are mistakenly assumed to have no emotions, but the fact is that research has shown that we have very deep emotions that we find hard to share. Friends and family have supported me. They have sometimes just sat next to me as I cry or walked with me as I speak of him. Quiet reminders to listen to the birdsong, to walk bare foot in the wet grass. To write poetry with my niece. Gifts of smiling roses and frames to put photographs of my brother in. The gift of a new god child due in autumn, conceived as my brother died.

I have had reminders to come back to my beliefs. Just as the tiny seedlings need support towards being resilient, so do us human beings. I have been reminded to come back to what I know is certain. To feel the heat of the sun on my face, to pick and eat my allotment vegetables and admire the deep pink clematis. To remember that everything is interconnected and everything is part of the wheel of life. Just as winter ravages, spring renews and summer replenishes.

As spring has worn on and the black cloak of grief has lifted a little I can see that I am not alone and that I have my precious family, my sister in law, my niece and nephew and their strength inspires me. I am surrounded by love and positivity. The cycle of life and the wheel of the year turn and bring wonder and joy.

As I write this I am travelling by train to see my brothers loving, resilient family. This weekend we will scatter his ashes together. The sun is pouring in the window as I write, across the page and across my face. I know he is near.

This spring has taught me what it is to be resilient. When I return home to Cornwall I will walk barefoot across the wet grass to tend my sturdy seedlings and think of my beautiful brother with a smile. My autism has meant that a lot of my journey through grief has seemed to be alone but woven around me have been love, support and this wondrous world we live in giving me the strength to look forward to the future.

Being a Disabled Pagan by Sylvia Rose.

Post by Sylvia Rose who is our District Disabilities Liaison for Devon, Cornwall, and the Isles

What’s it like to be a disabled Pagan?
In some ways, much like being an able-bodied one; in other ways it can be different. Obviously there can be physical limitations: you can’t get to rituals because you can’t walk that far, manage being cold for that long, or maybe can’t even get out of bed that day. More insidious are the internal differences. If you’re too spaced out for your brain to focus, even dragging yourself physically to a ritual wouldn’t mean that in your mind you were able to meaningfully participate.

So, you need to be kind to yourself. Maybe you didn’t even notice the last full moon. You didn’t mark the last seasonal festival. That doesn’t make you a worse Pagan: it makes you someone with a lot extra to be dealing with too. Over the last couple of years, as my health has become much worse, the usual seasonal celebrations have become painful for me. Not just the getting out of bed, but that that’s so much not where I’m personally at. Celebrating the burgeoning promise of spring when life feels more a matter of surviving than of looking forward? Dancing (or not, in my case) the maypole when rampant sexuality is the very last thing on my mind? I’ll opt out and stay in bed. And that’s ok. If where I’m at is somewhere very different, I have to make the best of what I actually can connect with. Birds nesting, swallows returning, flowers blooming, sunset lengthening and now shortening again, these are all the ways in which, intermittently, I stay in touch with where we are in the year, and with celebrating its pleasures. Sometimes that’s enough: it’s just different. I’ve certainly spent a lot more time watching the sparrows on the bird feeder than I ever did before when I was working.

And sometimes it gets harder to have faith. While everyone else is happily trilling how the Gods send you what you need/ask for/manifest from your own subconscious, it starts to look like by being so ill/disabled/debilitated, you’ve not being doing your Paganism quite right. Which is of course completely not true. Who knows why illness comes, but it’s certainly not sent by the Gods because of anything we’ve done or not done. Yes, you can learn things from debility: you can learn things from any adversity. It doesn’t mean that others are entitled to project their own views of the meaning of illness onto you, Pagan or otherwise. And if you yourself feel further from the Gods, uncertain of what you truly believe, that’s ok too. Don’t ever blame yourself, just go with it and see what might still make sense or give you a feeling of real connection to the greater world. (See sparrows above).

Don’t ever feel embarrassed to ask for healing, as if you might seem greedy for wanting more than your fair share of a ritual’s energy. If others are blessed with being able bodied, why shouldn’t they do something to help those who are less privileged? I’m sure that if the situation were reversed, you’d do the same. And in any case, working with healing energies benefits everyone, not just the intended recipient.

But you might want to spend some time thinking about what healing would actually look like for you. Able bodied people tend to assume that everyone wants to be like them, therefore healing is just about restoring someone to “normal” functioning. Which might be true for you too. But it might be something more complex, something deeper. Most people with a long term health condition, I think, would say that their illness or debility has gone towards making them who they are now. And if you don’t regret who you are, can you regret what it was that made you that way? So true healing might be in living better with your current reality, making your peace with how things are, having more options or less pain. Or maybe not. That’s the great thing about being a Pagan: no-one else can tell you what’s right for you. This Lammastide, the question I’m working with is from Starhawk’s The Spiral Dance: “what do you hope to harvest?”

And be creative. Do things intuitively, not by the book. If you can’t do things standing up, can you do them lying down? There are some strands of Pagan practice that use a lot of external props – the right colour candles and flowers, the right blend of incense, facing the right direction etc. In my view (others may disagree) externalities are useful in as much as they help us connect with something deeper, something beyond. But the true magic is going on within your own head, out of your own will and intent. So lie down and do it all as a trance journey, and you can have whatever colour candles you want, without having to do shopping first. Yes, it’s nice to work energy with other people there, or standing at your altar, but if you can’t, it still works from your sofa instead.

Sometimes illness feels to me like living in a bubble that’s floating gradually away from the quotidian world, to a place where my life is just so different from the usual day to day living that others can’t really follow me there. Which is true. So why would we expect able-bodied Paganism to reach out to our other place? We need to find our own disabled Paganism that works for us, individually, however we are. Which may be less about being connected with the cycles of the sun and moon, which can seem a bit distant, and more with our own immediate energy needs, and systems of self healing.

Some of these can be quite formal, such as reiki or chakra work, and some take more concentration than I can usually summon up. Some can be physical movements, which are useful when your body is working better than your brain. And sometimes I just don’t feel motivated, so I’m kind to myself and don’t. But here’s my favourite self-healing-while-lying-completely-still:

Take yourself into a trance state, whatever way works for you. Then see yourself entering a healing temple. Explore the edges, the quarters: what do you find there? Are there more things you’d like to add? Stand before the altar. What’s on it? Are there candles to be lit, incense to burn, water to purify yourself with? Is this temple sacred to a particular deity? (I usually work with Brigid, but there are many healing Gods). Invoke them, feel their presence. Maybe dance a bit, sing to them. (When you can’t dance in mundane life, dancing in a trance journey comes a close second). Are there other allies you’d like to be there to? Invite them. Then when you’re ready, go to a comfortable couch in the centre of the temple, lie down, and just open yourself to healing. Let energy, light, strength, whatever you need, surround you and flow into you. Luxuriate in it. Drink it in for as long as you wish, and then some more too. Then when you’re full, stand up, say your thanks and goodbyes and return slowly to the mundane world.
This temple is now yours.

It will be there for you whenever you need it and for whatever you need it for.

You deserve it.

Sylvia Rose – District Disabilities Liaison for Devon, Cornwall & the Isles.

 

Flare-up Ramblings From the Disabilities Manager

So, one of the few perks of being me, if you can call it that, (the ADD helps with this) is that when my brain is braining, I can do everything… All the things… All the stuffs! I can run the Disabilities Team, put together the Online Festivals, run the moot, cook elaborate meals for my family, go to my burlesque classes, go to the gym, write my novels, edit other’s novels, help with Pagan Dawn, support the community, raise money for charity, be peer support for an organisation I support for women with serious pregnancy complications and everything else you all see me doing (let’s face it, I’m not quiet about it; am i? I’m not all that quiet about much!)… But then, the time inevitably comes when I can’t do any of it… I can’t cook, I can’t walk, I can barely talk or type… I started writing this on the 28th of June (It’s currently 4am and I can’t sleep due to a persistent pain in my lower back, my hips and now my right leg… Which is bizarre and it’s usually my left leg…), I’m not sure when I’ll be able to finish it… Perhaps I should but dates throughout to show when I’ve written which bits…

I constantly have people suggesting that I slow down, not take on as much, only focus on one thing so I don’t overload myself… But my brain doesn’t work that way. The flare ups, the emotional and physical crashes that I get every few months, I get them whether I’m busy or not! So… While I’m able, I like to be busy and my brain works best when it has a lot to do. I can never concentrate on one thing for very long so it’s best if I do twenty minutes on one thing then switch to another then onto another until it’s all done. Took me years to figure out that was how my brain worked best and I’m very grateful for the knowledge, for see how well I work now I have this gift?

(Currently 8:50 1 July… The children are still asleep and I’m not in all that much extra pain today but my mind is more erratic than usual and I’ve been awake since about six with the same infernal song stuck in my damned head! Don’t even know what it’s called or the lyrics… Just a tune that I partially heard on the radio… The same few bars of the intro before it was turned off in time to listen to Paul O’Grady last week…)

I’m given a choice… Do nothing ever… Or do the things I can, when I can and then when I crash… Hope that those around me care and understand enough to allow me that time to recover from being all the crap that is me… I went through a phase… A few years, in fact… Of doing nothing. From 2013 to 2016, I sunk into a pit of self pity and didn’t engage at all with anything or anyone outside of the small bubble of my direct acquaintance… Was I happy that way? It was less complicated, that’s for damned sure… But I don’t think I could ever be happy unless I was serving my community, my country, my family and my friends…

So, I made the choice and I’m very lucky to be surrounded by the very people I’d always dreamed of working with. People who understand and tell me it’s alright to crash and take time for me and that my work will be right there for me when I get back.

(Currently the 4th of July – 3pm, just before the kids come home from school)

Just had a letter from PIP, I have an assessment a week on Thursday… Which is just what I needed when I’m in the midst of a rather scary flare up. Part of me is grateful because I always seem to be at my best for these assessments and find myself having to explain why I’m so coherent and able and trying to demonstrate how I am at my worst… They’ll likely see it for themselves this time… But the other part of me is very scared right now. I’m likely going to lose the tiny bit of PIP they “awarded” me last time, which was less than half what I was rightly entitled to but I was too weak to fight them… And this time I have no option, I’ll have to fight!

But also… This flare up isn’t like the ones I’m used to… Always before they centred around a particular side of my illnesses; the pain or the mental sluggishness or the forgetfulness and all the other stuff… This time… I’m getting it all at once and I feel myself truly drowning in a sea of pain, confusion, fear and depression… Always before I could focus on something to keep my mind steady until I could come out the other side and say “I’m alright, I’m back. I’m ok.” This time, I can’t hold onto anything… No lifeboat, no lifejacket… Not even a polo!

I’m sorry if these ramblings make no sense. Each sentence is struggling to get out amidst the sludge that is my brain… I keep saying sludge and I usually hate to repeat myself, which should give some indication of the lack of brain I have right now…

So, while I tread water in this sea of sludgy panic, I hope that you can forgive me when I’m not around and hope that you won’t think less of me for my weakness… And I hope you can trust me when I say that I’m fighting like hell to get back to you all…

Health Information Week

As a Staffordshire library assistant I’m very aware of the various campaigns run throughout the year to provide services for the public; your local library can provide a wealth of information and services for all walks of life from Baby Bounce and Rhyme sessions to access to Ancestry and Genealogy websites and training in the use of computers.

The beginning of July sees Health Information week, which the NHS explains as:

“Health Information Week is a multi-sector campaign to promote the good quality health resources that are available to the public. This campaign aims to encourage partnership working across sectors and benefit all staff and the public by raising awareness of the resources that are available to them.”

http://kfh.libraryservices.nhs.uk/patient-and-public-information/health-information-week/

But basically it’s about promoting good health practice and communication so that you know who to contact and who/how to get in touch.

Here in Staffordshire for example, this includes stalls and displays on a wide variety of health themes from Mental health and the availability of books on prescription* through to arthritis support and blood pressure testing, the  NHS site suggests that Health information week should help promote the following

Reduce the number of people who smoke
•Reduce obesity / increase exercise
•Support sensible drinking
•Improve sexual health
•Improve mental health and wellbeing
•Tackle health inequalities

Throughout the UK libraries will be running similar projects so it’s always worth popping in and having a word if you do need information.

*https://www.staffordshire.gov.uk/leisure/librariesnew/whatsavailable/Reading/Reading-for-Health/Reading-for-Health.aspx

Carl Johnson – District Disabilities Liaison for Mid-West & Wales.

National Arthritis Week with Catherine

Catherine Manning, our Disabilities Liaison for London, talks about National Arthritis Week.

If you weren’t aware this week is National Arthritis Week. I’ve had arthritis since I was 12 years old. I have 3 forms of arthritis and a number of other conditions thrown into the mix just to make life a little more interesting and challenging.

Arthritis is not just an old persons disease. It affects any age at any time. If I had £1 for every time someone has said “oh you’re very young to have that ” I’d be a rich woman. Another misconception is that it only affects joints. Rheumatoid Arthritis can and does affect joints, lungs, lining of the heart,connective tissue, eyes . I have RA in all joints and nodules in my lungs caused by inflammation.

Living with arthritis affects every part of my life from waking to going to sleep at night. It causes pain, swollen joints, extreme fatigue then you add the side effects of the medication into the mix…..nausea, sickness, thinning bones, weight gain. We take medication to counteract the side effects of the medication!

My life is made up of countless hospital appointments, physio and blood tests. My hubby helps with my day to day care. ….washing, dressing, cooking, cleaning. He’s an amazing gentleman but our relationship changes when he became my Carer instead of my lover. I know he’s worried and frustrated too and there’s not enough support for carers out there. Our wedding vows “in sickness and in health” are so true.

The hardest thing is to watch my 8 year old struggling and be in pain. He’s going through tests as it’s strongly suspected that he has Juvenile Arthritis. I can relate to everything he is feeling from worry to frustration to anger.

I had a wonderful job in the city but 2 years ago my contract was terminated because I couldn’t sustain my role due to pain, fatigue and hospital appointments. If I do something one day like taking the kids to school i then spend the rest of the day recovering.

Things that you take for granted, I struggle with such as holding a pen to write, cutting up my dinner, holding a cup of tea, brushing my hair, getting dressed. The list is endless but I won’t give up, arthritis will not win.

My name is Catherine and I have arthritis, arthritis doesn’t have me.

#nationalarthritisweek #nras #arthritisresearchuk

Catherine – District Disabilities Liaison for London