DPVP does NaPoWriMo

Do you love a good acronym?
For anyone who doesn’t know; DPVP is the Disabled Pagans Voices Project. This project, hosted by the Pagan Federation Disabilities Team, gives a space for disabled Pagans (and their carers and families) to raise their voices. We invite submissions in the way of blogs, essays, short stories, art, music, poetry and more. We welcome any creative offering that you would like to share.

Here’s Debi Gregory talking about the DPVP, two years ago at the Online Lughnasadh Festival about ways in which Disabled Voices could be heard.
https://www.facebook.com/DramaticDebi/videos/681926315292091/

One of my first interactions with the Pagan Federation Disabilities Team was to submit a poem to the DPVP.
https://www.youtube.com/watch?v=9oTlIA1XqV0

 

So what about the NaPoWriMo?
It is National Poetry Writing Month, an annual poetry project where poets (and the poetically curious) are encouraged to write a poem, every day for the month of April. The project was the brain child of poet Maureen Thorson who was inspired by National Novel Writing Month. Maureen started back publishing on her own blog in 2003 and as the project grew she started an independent website where people could link their own poetry.
NaPoWriMo is an amazing way to get people committing to writing poetry. Each day there is an optional prompt that you can work with. Everything from trying out different poetic forms like a Tanka (the Haiku’s older, longer, Granddaddy) or writing a New York Style poem (which is a veritable recipe and makes for really bizarre but enjoyable poem). It’s fun, its challenging and an excellent way to flex your creative muscle.

http://www.napowrimo.net/

Like any challenge it is meant to be fun, if you can’t commit to a month, do what you can. If you have never written a poem, feel free to find your muse and have a try. I’ve been participating in NaPoWriMo since 2014. What makes it special for me is having a community to share with. So this year I thought it might be nice to get DPVP poets and aspiring poets to participate in writing along with NaPoWriMo.

If you feel inspired to join in, send your poems or your blog links and we will publish them on the DPVP blog.

To get involved with the DPVP’s NaPoWriMo, email dpvp@paganfederation.co.uk and use NaPoWriMo in the title!

 

Jenny
National Deputy Disabilities Manager
District Disabilities Liaison – South East

Thoughts on how to complain

Sylvia Rose writes about how to bring up issues if your needs are not being met.

Firstly, it may help to see it not as “complaining” but as a somewhat more constructive process. And for that you may need to be clear in advance what you want the outcome of your complaint to be. Often when people complain they’re splurging their anger at something that’s just happened. That may be useful and it may be what you need, but it doesn’t usually help you in getting heard. Venting your frustrations may be better done on Facebook.

Something has happened which you think shouldn’t have. Do you want to give feedback to help make sure that it doesn’t happen again? Do you want to appeal an unfair decision? Do you want some form of apology or compensation? It helps to choose your strategy. And if your brain is inclined to be hazy (mine often is) it’s worth listing beforehand the points you want to cover, and what responses you are asking for.

Knowing your rights helps, be it disability rights, consumer legislation, whatever (see my previous post). This info is fairly easily accessed online, and it’s worth knowing what grounds you stand on before taking on an unsympathetic organisation.

And how you actually communicate can play a large part in how successful you are in getting your points across. It helps to aim to be assertive, not aggressive or aggrieved. If you can, watch your body language, your vocabulary (keep it polite) and your tone of voice. In my experience, nothing spoils your chance of being listened to as much as sounding shrieky and high-pitched. Aim for calm and reasonable. And in the interests of this, listen well to them as well. Acknowledge that they are human too, try to see where they are coming from, as well as not losing sight of your own agenda.

In addition to formal situations of complaint, there are innumerable ones where, as people with disabilities, we have to stand up for our rights to be different, often with people we like and respect, and who runs groups or rituals we want to still be welcome at. This may take more subtlety. Firstly, I find it helps to really deep-down believe in disability rights as important, and that in challenging someone’s “ableism” I’m arguing not just for my own good but for that of everyone who comes after me who could find themself in a similar situation. Often these are times when we can’t change what’s just happened, but we could help avoid it happening again. But only if we make our case in a way that can be heard.

There is a Buddhist saying that all speech should first pass through three gates: “is it true”, “is it necessary” and “is it kind”. This can be a helpful reminder.

Non Violent Communication theory is another way of helping us look at how we ask for things to be changed. It runs roughly along the lines of: name the issue, say how you feel, say what you’d like changed. So maybe “when you tell us all in ritual to stand up, I feel embarrassed because I can’t. Perhaps in future you could take that into account”. Not “you make me feel horrible about myself because I can’t stand for long”.

Starhawk has written in The Empowerment Manual that many problems in groups can be helped by having a group commitment to feedback as a useful process. This means both finding ways of giving it, as kindly as possible, and being open to receiving it too, in the interests of all learning to work better together for our common purpose. People don’t know what disability feels like unless we tell them.
Donald Engstrom-Reese, another Reclaiming teacher, has put together what is my favourite guide to critique. Before you speak, ask yourself: is this feedback given with the other person’s permission? Am I speaking for myself not for unspecified others? Am I saying this at a good time and place, not just when it occurs to me? Am I specific and clear? Am I focusing on something that can actually be changed (because if not, there’s not much point)? Is my intention to be helpful, not just to sound off about how I feel? And am I open to receiving feedback in turn, because if I’m not, it’s a bit hypocritical of me? http://wearewalkinginbeauty.org/Walking_in_Beauty/Sustainable_Critique.html

These things are of course not easy, especially in the heat of the moment. And disability needs are so shockingly ignored that often we are right to be angry about it. But let’s also remember that as Pagans we can see the bigger picture, and hold our intent of moving things forward in the best way for everyone.

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.

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

 

Meet Jenny Luddington

Don’t be fooled by these jerks that I got.

I’m still, I’m still Jenny from the block.

Well Jenny from South East and I’m your Disability Liaison. The jerks to which I refer are my myoclonic seizures. I was diagnosed with temporal lobe epilepsy when I was 17 and had a bit of tough time getting my tonic clonic and absence seizures under control but did manage in my mid 20’s after a couple of years I asked to try to be weaned of meds and all went well for about a decade. Had a breakthrough seizure in 2012 and suddenly started having myoclonic seizures, which I didn’t know where even a thing, they’re brief muscle contractions, I throw things and fall over. Again I have gained control of T/C’s but the jerks not so much!

I’ve been walking a Pagan path since my mid 20’s I was solitary and then joined a (w)icca learning circle, which pretty spectacularly imploded. I vowed off ever playing with others. Alas, I do like a bit of ritual and I’ve a soft spot for a sabbatical chant. Initially I joined the Dover Moot, but alas lots of people moved away. I then joined the Kent Goddess Group (a women’s ceremonial group) and my personal practice was becoming more Hellenic Recon.

Eventually some of the Dover Moot people who had moved away moved to Folkestone (hooray). We founded Folkestone Pagan Circle and I have helped to facilitate a Pop-Up Temple, Open Beach Rituals, Moot and Red Tent. I have recently stood down as chair and was looking for a new challenge.

This was around the time of the first Pagan Disability Team Online Festival. Nature, abhorring vacuums as she does, I thought ‘That’s a marvellous idea’. I was called to contact the lovely Debi and offer my services to Disability Liaison for the South East. Debi said ‘There isn’t one, would you like the job?’

When Goddess calls who are we to refuse?!?

So why volunteer? What do I want to bring to this role? For me I think one of the hardest things about living with a disability or chronic illness is isolation. Not everyone wants to go to a Moot or be involved in group ceremony and it’s awesome to be a solitary practitioner. However, it is nice to have the choice, whether that is helping groups to think about making events and venues accessible or using technology to bring the Sabats to you. What I hope to do is include you too. I want you to feel a little more connected to your Pagan community. Please share your ideas on how we can make that happen.

Jenny

Jenny Luddington is the Deputy Disabilities Manager and the District Liaison for South East region.