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Disabilty Pride Brighton’s constitution - 3rd May 2017
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Volunteers Wanted!
Hello everyone If you are interested in getting involved in Disability Pride Brighton as a volunteer or are taking part in the event in any way (other than just coming along), please join our Loomio group - link below. Loomio is a great way to get people together online and for getting things done! It may look complicated but is actually very simple and straightforward to use. Cheers Jenny https://www.loomio.org/invitations/b1ae6ced378866d32fc9
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Performers Wanted!
Hi. Don't forget - as this event is mainly user-led by the disabled community, we are looking for performers, comedians, singers etc who identify as having some form of disability. If you want to perform, please complete one of these application forms. Thank you. https://www.surveymonkey.co.uk/r/TZWXN38
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Facebook event page, please let us know if you’re coming!
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Here is my new song about disability awareness, discrimination and disability pride - "Normal". Thanks to my (mostly!) lovely daughter, Rachael, for singing, to Kieran for the tune and for playing the guitar, to Rachael and Kieran for the arrangement, to Ruby (Rachael's almost two year old) for banging on the window with first the remote control and then a shell, to Charlie for keeping Ruby inside the house, to Ben, the Irish Wolfhound for walking in front of the camera and, finally, to James for not letting Ben run into the road. A real family production! PS Please excuse my witch's cackling at the end.
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Meeting results
On the 18th of March the first open Disability Pride Brighton meeting took place to allow people with disabilities to have their say on the planning of the event. There were 5 main questions for which many responses were received all of which are available to view here.
Note: The text in BLUE are comments from people who identify as having a disability.
Question 1
What made you want to get involved?
What would you like to get out of it?
What would you like to feel?
What do you want Disability Pride Brighton to be?
What do you want it to achieve?
Answers may include socialising, loss of isolation, seeing all disabilities included, making people more aware of disability discrimination, gaining respect, inclusion.
Answers to Question 1
Question 2
Not this year but…
How do we achieve this?
What would you like to see at Disability Pride Brighton next year?
How do you see the future of Disability Pride Brighton?
What ideas do you have?
Answers to Question 2
Question 3
Ideas for small scale things
Free, cheap and low budget
Ideas for fundraising now
Very important – do you have any personal contacts of people who might sponsor us
They can sponsor an item or give an amount – their name will be on Facebook page and website
Answers to Question 3
Question 4&5
Do you have any access needs that might not have been considered?
What do you think are most important things we can do this year?
What is the minimum it needs to be an inclusive success, for the first DPB?
Anything else you want to mention, contribute, add or ask?
Concerns?
Feedback about today?
Answers to Question 4&5
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Open meeting instructions
Hi everyone
I am writing to you prior to the open meeting which takes place next Saturday – 1.30pm, 18th March at the Brighthelm Centre.
Firstly, we need to have some idea of numbers for Brighthelm Centre for teas and coffees. As I write, we have 40 definite people attending and 99 interested. This is a huge margin so I would like to find out if you are definitely coming or not. If you think Disability Pride Brighton is a great event and you are interested in it, but are not attending the meeting, then thank you for your support but please don’t RSVP as interested. If you have put yourself as ‘interested’ but are definitely coming, please can you change your reply to ‘going’. Scope’s Local People Programme (Brighton) are funding this open meeting because it is a disabled community-led event but they can only give us a finite amount of money and we don’t want to waste it by paying for refreshments for people who say they are coming and then they don’t turn up! To clarify, if your name is in the ‘going’ box, you will get in and get a free drink and a biscuit – if your name is only in the ‘interested’ box, we can’t promise that you will. Sorry.
If you are coming to the meeting, we need to find out which category you feel you fit into for monitoring purposes. We would be grateful if you would let us know.
• Person with disabilities/special needs • Unpaid carer/family member • Paid carer or professional working in the area of disability • Interested community member
As I said, Scope has given this funding for the open meeting (not for the event itself) as long as it meets this criteria: help and suggestions will be valued by all but decision making will be by local people with disabilities and/or their carers and families. If you wish to come and you don’t have disabilities, please note that your role there will be of a listening/supporting kind and not as a decision maker.
On the subject of care and support, if you need one to one support to take part, we don’t currently have capacity to support people so please bring a carer, PA or professional with you to help you engage. We will have a BSL interpreter, if you need it (let us know if you want us to save you a seat at the front for this) and the venue has a level surface and accessible loos. If you have any other access requirements, we will endeavour to see if it’s available but, unfortunately, we won’t be able to fund any costs. If you would like to contribute but are housebound, please message us or let us know so we can send you an online survey after the event with some discussion points.
On to the next important issue – money, or, rather, lack of it. This first year will be a smaller event than we may have anticipated, mainly because we don’t have any funding. It will still be a celebration of and for people with disabilities but I envisage it to be more like a bit of a party!
We would be particularly interested to hear if you have any ideas for funding. I have set up a Crowdfunder and this is the link. http://www.crowdfunder.co.uk/disability-pride-brighton
This leads me on to another point. It is fabulous that so many people have offered to perform at the event. However, as mentioned above, although it would be wonderful to be able to pay everyone, we simply don’t have the money. This means that it will be open access and people within the community can apply for performance slots on the understanding that they will be performing to support the community and not for pay! If you are a performer/artist and would like to take part, there will a form for you to complete at the open meeting.
Incidentlly, I just want to reiterate that this event is for ALL PEOPLE WITH ALL DISABILITIES. As several people have mentioned, the word ‘Pride’ in Brighton has connotations of people who identify as LGBTQ but Disability Pride is an international phrase and is used for Disability Pride New York City, Philadelphia, Chicago etc so, because we are running our event simultaneously with several other Disability Pride events, we want to keep our name the same. Obviously, any LGBTQ people with disabilities are more than welcome, as are any people with disabilities from other marginalised groups.
So, final reminder – TO DO:
Please change your ‘interested’ to ‘going’ if you are definitely coming to the meeting AND let us know which category you feel you fit into: person with disabilities/special needs; unpaid carer/family member; paid carer or professional working in the area of disability; interested community member.
Many thanks.
Jenny
PS One more thing – someone has just suggested name badges to me. If you want to make yourself one, please do or there will be some stickers on the tables.
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Open Meeting
We will be having an open meeting to allow people to have their say on how the event is run at 1:30pm on Saturday March 18th at the Brighthelm centre in Brighton.
If you would like to take part then please sign up via our event page on facebook or email [email protected] to confirm your attendance.
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Disability Pride will be held on the 9th of July from 2PM on New Road in Brighton.
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The beginning
The following is a copy of the Facebook post Jenny made the day after her daughter, Charlie, was thrown out of a pub for being disabled.
“Last night, my nineteen and a half year old, adopted, disabled daughter, Charlie, was thrown out of a pub - the Mash Tun in Brighton - for being disabled. Charlie has two chromosome abnormalities and is a bit of an enigma. On the one hand, she is very innocent, child-like and can't read or write but, on the other hand, she has a great vocabulary and wants to be a teenager, just like other young people her age. She will never be able to do things on her own because she is vulnerable and unaware of consequences.
Anyone who has met Charlie will know that she is one of the sweetest people you could ever wish to meet. She fits in anywhere and, when she is with me and my friends, she chats away (usually about Justin Bieber!) or quietly plays on her iPad. I have always been able to take her anywhere and she enjoys a full life - going to theatre, concerts, cinema and other social events. In the last week, for example, she has been with me to a pizza restaurant with 20 other people; to several cafes to meet friends; on an i360 flight on the opening day; to a funeral of a friend (Taylor) who was always lovely to Charlie and who, tragically, died of a heart attack in his late twenties and she has also been on the boat with lots of Taylor's friends and family trip to scatter Taylor's ashes. (I was particularly proud of her because she has a lot of empathy and, of her own volition, she hugged and comforted Taylor's partner, David, several times as well as telling Taylor's brothers that she was sorry for their loss.) Charlie has also just been on her first date (accompanied by his parents) with a lovely boy, Harry, who has Down Syndrome. She was so excited and they both say they are in love.
Such is Charlie's good behaviour that several of my friends have taken her out and, indeed, a friend of mine is taking her to the cinema on Wednesday. This particular friend has taken Charlie to several events without any problem, as have other friends.
I adopted Charlie at the age of three with her two siblings and she has never willingly caused me a moment of trouble. (I wish I could say the same about the other two - but that's a different story.)
Last night, a good friend offered to take Charlie and me out for a meal last night. After the meal, at 9.30pm, we were walking back to the disabled space where I had parked the car when we heard some music coming from the Mash Tun.
As it was a beautiful evening and it looked like a nice atmosphere, we decided to end the night by sitting outside the pub with a drink. I always carry Charlie's passport with me because she doesn't look nearly 20 and I showed it to the doorman. We then ordered our drinks at the bar. There was only one other customer in the pub as everyone else was sitting outside on the benches. As we were being served, I suddenly noticed that Charlie was crouching quietly (ie. not making a sound) on the floor with her hands over her ears. I was surprised as it is not something I have seen her do before and she said it was because a sudden burst of loud music had startled her. As I was telling her to stand up, the barman (who said he was the licensee) said she would have to leave. I was shocked and explained that she was disabled, that the music had temporarily scared her but that she was okay now. He insisted that she would have to leave because he couldn't have someone doing that in a pub. He said it was Pride weekend and he had had to throw out at least three people an hour. I said that Charlie had not even had a drink and that her behaviour was because she was disabled. He insisted that she was not welcome. During this conversation, my friend took Charlie to stand just outside the open patio doors.
I told the licensee about the Equality Act and that it was not right to discriminate against her because of her disability. I explained about her chromosome abnormalities and asked if he would discriminate against someone in a wheelchair. He said of course he wouldn't. I said there is no difference between discriminating against a physical or a mental disability. I said that she had only been crouched down for a couple of seconds and that no one had even seen, that she had not been in anyone's way (as I said, the pub was empty, no one had complained or even seen and she is tiny - she weighs under five stone and is only 4 feet 8 inches tall) and that she wouldn't do it again. In any case, we were going to sit outside with our drinks.
At no time did the conversation become heated or argumentative but I was trying to explain very calmly that he was not allowed to discriminate because she is disabled. The other barman said to me, 'Right, you have had your say now so you can leave.'
I said that I was trying to continue to explain because I thought he would see sense. They still asked us to leave so I had no option but to do as they asked.
Of course I feel angry but, more than that, I feel extremely saddened; saddened that what had been a lovely evening was turned around so quickly but more saddened that Charlie had not been allowed to do what other people can do because she is disabled. She was not hurting anyone and never would. She is a delightful girl whose chief aim in life is to please people. She was so distraught by what happened that she is still crying about it the following morning. She keeps saying that everyone hates her, that everything is her fault, that she wants to die and that she wishes she wasn't disabled. It is heartbreaking and totally unjust.
The Equality Act exists so that people are not treated unfairly because of their disability. Not only was Charlie treated unfairly, the licensee also broke the law because I had told him about her disabilities and he had no good reason to ask her to leave. If she had been doing anything to cause any nuisance to anyone (not that she ever would) then, of course, I would have willingly taken her away.
It was Pride weekend in Brighton - a glorious celebration of the total acceptance of and non-discrimination of a group of people of whom Charlie and I have many friends. We always watch the Pride parade and Charlie loves it. It is ironic that it was during this wonderful weekend that Charlie was discriminated against; proof that, although one group of people are now completely deservedly accepted in Brighton, another group - the disabled - aren't. How sad and how very un-Brighton.”
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A lovely German friend of mine has just sent me a German proverb which translates to 'where there is lots of light, there will be a lot of shadows as well' and this has certainly been true.
As many people will know, I was a volunteer for adoption charities and for disabled organisations for many years. I sat on several steering groups to help improve situations for disabled people and even helped to recruit staff for East Sussex County Council - I did it all voluntarily because I was trying to help to make a difference.
I am very thankful and surprised at the amount of attention and publicity Charlie's experience has been getting. It illustrates how many people believe that disability discrimination is not acceptable but, sadly, from the hundreds of messages I have received from people with disabilities and their families and carers, it would appear that it is still very much alive. I sincerely hope that this publicity can be used to try to eradicate this discrimination. Although the publicity, public interest and limelight of Charlie's incident is dying down, I do not want disability discrimination awareness to die down. In particular, people need to understand that disability is not always visible.
As I said on BBC Sussex radio, I was contacted by a 25 year old man who is quite newly blind and he has had a lot of discrimination and obnoxious comments because people were annoyed at his stumbling. The reality of life for a person with disabilities and their parents and carers is that it is extremely difficult and often completely exhausting, without having to cope with unnecessary discrimination.
Finally, what would be wonderful - and positive - about this whole situation would be for it to set a precedent to ensure no one else has to suffer. Brighton is supposed to be an accepting and inclusive place and is a wonderful place to live - DISABILITY PRIDE anyone?
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