Spoons and Spanners in the Works…

Sometimes it’s easy to get caught up in your own reality and to forget, at least for a time, that your reality and someone else’s isn’t always the same thing. Even if you experience the same situations, in the exact same way, your perceptions of those experiences, the way your minds process them, can be worlds apart.

It’s not always as simple as saying “this happened and this is how you should all react” because one person’s offence is another person’s humour. What one individual may find traumatic, another may not even notice has happened and that’s all before you take personality and personal circumstances into account! It’s both a fascinating and excruciatingly complex part of the human condition… And when you’re in a situation where you have to navigate these experiences, both your own and others’, on a regular basis, it is quite literally impossible to get it right 100% of the time. On top of all this is the fact that even if perceptions align, support is given in the right places and personalities don’t rub the wrong way, we must also walk the tightrope of constructive communication.

Many of you may have noticed that the Disabilities Team had a bit of a breakdown of communication some weeks ago. This wasn’t the whole team; I’d like to make that very clear. This was a case of unsuccessful communication between the management and, as I’m the Disabilities Manager, the blame for that has to rest on me, at least partly.

I won’t go into too many details because, frankly, this was a private matter that should have remained private, but I made a choice to support my community in a certain way and part of the way I do that is by being as honest and frank as I feel is appropriate… And what I feel is appropriate is often too honest and frank for some people! So, with respect to the others involved, I’d like to give you the explanation I feel you deserve but I ask that in return, you, as the community I serve, remember that one side of a story, or even two or three sides, even combined together, don’t always reflect the truth because perceptions differ, so the best policy is to remember that if you weren’t there, it probably isn’t any of your business… This is a lesson I’ve learned the hard way and the long road to the discovery has caused me many a headache, including the one that led to this particular miscommunication.

Long story short, I said some rather inadvisable things during what I thought was just a usual bought of low mood in a private capacity. As it turns out, this was more than a case of simple low mood and more of one of those times that I probably should have been shut in my bedroom and had cookies thrown at me through a cat flap until I was safe to come out again. Instead, I refused to accept that I was feeling quite as bad as I really did and when it was pointed out to me by someone I cared about, I did what we typically do and I lashed out. What can I say; I’m only human!

However, instead of this episode of private health issues and personality clashes being kept private, it was taken further and I asked for help. It seems that I asked for help in the wrong place as when I expected the support system I had helped to create to support me, it collapsed. This is partly my fault and partly the fault of others but I want to make it perfectly clear that no malicious intent was intended by anyone. This was a series of misunderstandings, bad communication and general human error on the part of a few people who are all trying to do the work of ten people each… That drastic workload being undertaken by a brave few could not keep on going without something unfortunate happening… And, as usual, my impatience and inability to just let things go brought it all to a head.

I want to apologise for the confusion, the upset and the distress that this situation has brought about to my friends, my colleagues, their families and the community. I couldn’t keep going forever and I’m now, in hindsight, rather shocked at just how long I managed without having a total meltdown (I have the support of my team and you people in the community to thank for lasting so long!)…

Procedures were in place to stop this sort of thing from happening but since the team has gone through some pretty drastic changes over the last year, those procedures needed updating and communicating to people and it is directly my fault that this wasn’t done and I really can’t apologise enough for that.

After discussions with the PF Committee and the Disabilities Team, I’ve decided that, if you’ll all still have me, I would like to remain in my post as Disabilities Manager, after a break and some readjusting of roles and support procedures to reflect what this unfortunate episode has highlighted…

I hope that you will join me in applauding the team and how they have dealt with this issue with dignity and integrity and I hope you all had a Happy Yule and a blessed new year.

xXx Debi xXx

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

So, is your moot disability-friendly?

So, is your moot disability-friendly?

And no, I’m not talking about wheelchair access. Well, that’s a part of it, but there’s so much more. And no, we can’t always get it right, especially with limited choices of venue. But that shouldn’t stop us from trying. In a lot of ways, it’s often not so much about actual arrangements as about having an attitude of concern and inclusiveness.

Firstly, are there physical barriers to people attending? People with disabilities have, obviously, very differing needs and conditions, so there’s no “one size fits all”. There are people in wheelchairs who can do slopes but not steps, and people with balance difficulties who can do steps but not slopes. Is there Blue Badge parking nearby (this includes not only designated bays but also permission to park on double yellow lines so long as this does not cause an obstruction)? Are the chairs adequately comfortable for someone who might have difficulty sitting upright for too long? Are the lighting and acoustics good? If the answer to any of these questions is no, is there anything that can be done to help? And is all this information – or at least the most important bits – available online somewhere?

Then there may be emotional or cognitive barriers, which are often the more difficult ones to spot. If a new person has social phobias or anxieties, would they feel encouraged to ask for support such as meeting someone from the moot one-to-one first, before coming along to the moot itself? If they have particular needs, is there a space where they can ask for what they need? Is the moot tolerant of differences such as autism or learning disability? Are there assumptions that everyone is literate? If someone is too shy to speak out in a moot, could there be a go-round at the end specifically for people who haven’t spoken to have their say? Or use a talking stick? And not everyone likes to be hugged: many people, for reasons ranging from neurodiversity to a past history of child sexual abuse really don’t like to be touched – how would you make space for it to be ok for them to say so?

Disability, of whatever kind, has a tendency to restrict people’s ability to work, and therefore to be financially resilient. Many disabled people either can’t drive or can’t afford to run a car. Is your venue on a bus route, and if so, does the moot finish before the last bus runs? Would it help if someone offered them a lift home? If you’re in a pub, is there an expectation that everyone buys their own drink?

Part of the problem, it seems to me, is that humans, by design, think in categories. There’s normal and there’s not-normal. When someone is a wheelchair user, it’s fairly obvious what their restrictions might include. But when disabilities are invisible, the onus gets put on the person themself to explain their needs, which is easier done in an atmosphere of welcomingness, of inclusiveness, of sensitivity to difference and in individual needs.

I’m aware that this piece is really only a quick skim through these issues. If you can think of helpful suggestions that I’ve missed, please add them in the comments below, and I’ll see if I can collate them for a future piece.

Sylvia Rose
District Disabilities Liaison for Devon, Cornwall and Isles.