to download our booklet about the 'What's Normal Anyway'

E13 People UnitedWhat’s “Normal”Anyway?Family, Faith and Communitydeveloping the legacy of theLondon 2012 ParalympicsContributed to byAct Up!, The 3Hs, Hope & A Future, Ju90,and Portway & Plaistow Primary Schools

What’s it all about?E13 People Utd was born of research carried out in 2008 when Plaistow Children’sCentre was opening up. A survey of 600 parents showed that a high proportionwanted opportunities to learn about other cultures and faiths in our local community.Our first activity to meet this desire was a ‘Faith and Neighbours Walk’ in 2011 - morethan 70 people visiting 5 different faiths’ local places of worship over a Saturdayafternoon, hearing at each from a faith leader about what it means to be a goodneighbour in their tradition. From this we also developed a ’Good Neighbour Pledge’which we launched with a party in November 2011 and are still promoting. In 2012we organised a triptych of conversation evenings to explore approaches to birth,marriage and death across the cultures and faiths (see our publication sharing thisexperience).After the London 2012 Olympics and Paralympics our core group decided to prepare aseries of events to explore their impact on people’s perceptions and commitments,with a focus on cultural and faith perspectives on disability. Three evening eventswere organised in Spring and early Summer of 2013, incorporating drama, music, andconversations in pairs and groups. The core group learned a lot through the processof planning the events and, of course, still more along with the participants at theevents - especially through our partnership with disability groups and disabledindividuals.This publication is part of our effort to share and extend some of that learning, raisethe issues in the wider community, and encourage action to make our families, faithgroups and communities more `disabledfriendly’,including by signposting people topotential resources. We are also sharingelements of the events on our website, andthere are links to the relevant `pages’ in thispublication.2

ContentspageDisability & Family Life 4Disability & Faith Life 6Disability & Community Life 8Ju90’s ‘What’s normal, anyway?’ 10Summary reflecons 21Resources Directory 22Contacts 243

EVENT 1DISABILITY AND FAMILY LIFEChildren from Portway Primary School launchedthe series singing songs by David Guea and Katy PerryYou shout it outBut I can't hear a word you sayI'm talking loud not saying muchI'm cricized but all your bullets ricochetYou shoot me down, but I get upFrom ‘Titanium’ ‐ David GueaYou don't have to feel like a waste of spaceYou're original, cannot be replacedIf you only knew what the future holdsAer a hurricane comes a rainbowFrom ‘Fireworks’ ‐ Katy Perry“I'm a single parent of 2 young children withdisabilities. My son has a diagnosis of Autismand has severe learning disability. It wasimportant to me and my family that we couldaccess the community just like everyone elseand be amongst friends and family. I foundthat almost everyone had a willingness to tryand make things easier for us but didn'tnecessarily know how. As a parent it can getfrustrating - I found that for the places Rizwanreally enjoyed going to it was worth the effortmaking relationships with the community as itmade the whole experience much more fun.I feel that we all should try and make ourhomes and work places accessible so thatNewham can truly be an accessible borough.”Zeenat Khan (The 3 Hs)Act Up! Drama group performed “Changing Atudes”based on personal experiences of the actorsFriend 1: That’s in breach of the Equality Act.Bouncer: The what?All: The Equality Act 2010!Friend 2: You can’t refuse us entry because of ourdisabilities.Friend 3: Yeah we’ll report you!Friend 1: Yes and if you don’t change your attitude,your club might be closed down.Friend 2: What you're doing is against the law.Bouncer: against the law?All: yes!4All non disabled people together:We don’t cast judgement on disabled people.All the disabled people:Thank you for listening to our stories (sign).Actors: Carey Noel, Chelsey Cairns, Ellen Goodey,Faisal Bu, Houston Rasandram, Jade Sempare, LoeBrown, Sterre Ploeger, & Yvonne Brouwers

What’s normal, anyway?Ju Gosling aka ju90 for E13 People UnitedNormal is being fat.Normal is being thin.Normal is being visually impaired.Normal is being old.Normal is being young.Normal is being hard of hearing.Normal is being Black.Normal is being White.Normal is having a learning difficulty.Normal is being Christian.Normal is being Muslim.Normal is needing step-free access.Normal is being a woman.Normal is being a man.Normal is speaking in Sign.Normal is being gay.Normal is being straight.Normal is not looking like everyone else.Normal is being happy.Normal is being sad.YouTube video with subtles:hp://youtu.be/ddd‐wDgnTSM10

Normal is hearing voices.Normal is growing up in Newham.Normal is coming from the other side of the world.Normal is not thinking like everyone else.Normal is living in a city where less than one in five tube stations have step-free access.Normal is spending an hour on the telephone to book a wheelchair space on the train,because the online system doesn’t cater for disabled people.Normal is having just one space for wheelchair users on the bus.Normal is the bus driver who refuses to stop alongside the kerb to allow you to board.Normal is the parent who refuses to remove their buggy from the wheelchair space to allowyou onto the bus.Normal is living in a capital city that has the least accessible taxi fleet in the country.Normal is booking a Black Cab online or by phone, and then being told that no driver willtake the job because you are a wheelchair user.Normal is having a mini-cab driver complain the instant they arrive because you have awheelchair, even though they could have been faced by three drunk men with lots ofluggage instead.Normal is having a taxi driver refuse to take you, because you have an assistance dog.Normal is having lots of people watching while you struggle to unload your wheelchair fromyour car, but no one offering to help.Normal is living in a capital city where the European Blue Badge scheme isn’t recognised inthe centre, which is where most national attractions and major stores are based.Normal is never being able to find a Blue Badge parking space locally when you attempt toaccess visitor attractions and shops.11

Normal is being surrounded by leaflets,posters and websites that we can’t read,because they don’t follow accessibledesign guidelines, and use difficultwords.Normal is being forced to communicateby telephone, when hearing impairmentsand/or memory problems and/orpain make this difficult or impossible forus.Normal is being told that everything weneed to know is available on theinternet, when we don’t have any access to it.Normal is never being given enough notice to book the support and transport we need toattend community events.Normal is entering via the back door and then sitting at the back of the room.Normal is attending an event where there is no amplification for and lighting on the speakers.Normal is attending an event where the speakers continually turn their backs on the audience,making it impossible to lip-read.Normal is attending an event where there’s no BSL interpreter or Palantype sub-titles, evenwhen the event is specifically aimed at disabled people.Normal is being asked to attend a meeting specifically for disabled people, and finding thatno access support has been provided.Normal is a venue leaving their hearing aid loop at the back of a cupboard for years, ratherthan installing it so it’s always available.Normal is no one understanding how to install the hearing aid loop when it’s asked for.Normal is no sign language interpreter turning up, even when they’ve been booked monthsahead.12

Normal is yet another multi-million-pound building opening where the access is poorer than thebuilding it replaced.Normal is event organizers refusing to listen, however many times we explain why a new buildingisn’t accessible to us.Normal is event organizers believing that they know what our access needs are better than wedo.Normal is staying at home.Normal is being bullied in your comprehensive school because you’re in the ‘special zone’.Normal is not being able to take GCSEs, because your special school doesn’t teach them.Normal is being refused entry to the collegecourse you want to study, becauseyou have learning difficulties.Normal is being unable to apply for the universitycourse you want to join, becausethere is no Blue Badge parking.Normal is not being able to make friendswith your fellow students, because youhave no access to a BSL interpreter outsideyour classes.PA his permission to record the class on video.Normal is not being able to do your homework,because the lecturer refused yourNormal is being told you can’t join an adult education class, calling you a health and safety risk.Normal is being thrown out of the local community choir and steel band, calling you a healthand safety risk.Normal is no one speaking to you when you join a community group, even though you areblind.13

Normal is seeing yet another advert for a television programme where disabled people aretreated as freaks.Normal is listening to a comedian make yet another ‘ joke’ about disabled people.Normal is reading yet another stereotype of dis-ability.Normal is a world where 97% of publicly funded cultural workers and artists are nondisabled,even though 20% of people of working age have an impairment.Normal is watching the Paralympic Ceremonies, knowing that 97% of the volunteer performerswere non-disabled.Normal is being regarded as asexual, genderless and forever child-like, rather than as sexual,adult men and women.Normal is being unable to come out as lesbian or gay, for fear of losing the family supportyou need to survive.Normal is being unable to come out as lesbian or gay, for fear of your PAs victimizing you.Normal is being unable to access yourlocal lesbian and gay group or club,and being made to feel that no onewants you there anyway.Normal is being 22 and living in an oldpeople’s home, because there is noaccessible housing available.Normal is being 32 and trapped in yourhome, because you can’t afford thenecessary adaptations.Normal is being 42 and forced into acare home, because you are deemedto be too expensive to live independently.14

Normal is living in an accessible home, but not being able to access any of the homes ofyour family members and friends.Normal is having very few friends, none of whom are non-disabled.Normal is people judging everything you do as being inevitably second-class, because theysee you as a second-class person.Normal is seeing all of the money allocated to support disabled people being spent on nondisabledworkers.Normal is sitting in yet another meetingtelling non-disabled professionals how todo their job, but not being paid for it.Normal is being offered payment to attenda meeting to tell non-disabled professionalshow to do their job, but beingpaid for the whole day at less than thenon-disabled consultant who decided theamount you receive was paid per hour.Normal is being barred by a securityguard from entering the building you’reworking in, because as a disabled personyou can only be “a member of the public”.Normal is not being short-listed for job interviews, even though you are much better qualifiedthan the person who eventually gets the job.Normal is the vast majority of employers stating openly that they would never employ a disabledperson.Normal is the 55-year-old graduate who’s never worked, despite applying for thousands ofjobs.Normal is being told that you’re lazy and work-shy.15

Normal is attending family functions to find that no one speaks to you apart from your closestrelatives.Normal is not being included in family outings and holidays.Normal is being told you’re not welcome at your brother’s wedding unless you come withoutyour wheelchair.Normal is having your sister-in-law take control of your Motability car, while you’re left to walk.Normal is having your parents spend your benefits on themselves, leaving you with nothing.Normal is being rejected by your parents and siblings.Normal is being left by your partner when they realize you can’t be ‘cured’.Normal is being ignored when you are the advocate for your disabled child.Normal is being treated badly because you are a brother, sister, parent or friend of a disabledperson.Normal is being a member of the poorest group in society.Normal is being the hardest hit by cuts to benefits and services.Normal is having other people believe you are richbecause of what they read in the papers and hearfrom politicians.Normal is being blamed for society’s difficulties,even though you have no control over them.Normal is being stereotyped as dishonest,untrustworthy, untruthful.Normal is being berated by parents and siblings fornot being able to ‘overcome’ our conditions, spurredon by tabloid headlines about war heroes andbenefit cheats.16

Normal is having strangers scream abuse at you in the supermarket car park.Normal is having passers-by make fun of you at the bus stop.Normal is someone stealing your bag in the street.Normal is having other people set their dogs on youwhen you take your assistance dog to the park.Normal is your neighbours attacking your property,and making death threats against you.Normal is being hit by your partner, who’s also yourcarer.Normal is not having the crimes against you recorded by the police, because you are notregarded as being a reliable witness.Normal is not being believed when you go to court, because you are not regarded as beinga reliable witness.Normal is continually having murders described by judges as being ‘inexplicable’, ratherthan being identified correctly as disability hate crimes.Normal is pretending that you don’t have an impairment, if there is any way at all that youcan hide it.Normal is being constantly required to provide every personal detail to strangers.Normal is only having access to the help and support you require if you are deemed to be in‘substantial’ or ‘critical’ need.Normal is being provided with support only when it suits your PA or care agency, not whenyou need it.Normal is being charged for support you haven’t received, because the care agency wantedto provide it when you weren’t available.Normal is being left on your own every evening and all weekend, with nothing to do but sit infront of the TV and eat.17

Normal is having yet another PA leave without giving notice, because they know you can’tdo anything about it.Normal is struggling to cope in the absence of yet another PA.Normal is not being able to book emergency support from a care agency, because thehourly rate you receive from the council hasn’t been increased for a decade, but the agencyrate unsurprisingly has.Normal is being told you are not in substantial need even though you are quadriplegic, sinceyour child is deemed able to provide you with help.Normal is being blamed by society for the fact that your child is being forced to providesupport for you.Normal is having your child taken away from you, because you are judged unfit to be aparent.Normal is being denied the support you need to be a good parent.Normal is being forced into having an abortion because you ‘can’t be a good parent’, eventhough your child is very much wanted.Normal is having an Equality Act that spells out all of the ways in which you can legally bediscriminated against.Normal is having a medical system where your life can be judged not to be worth living.Normal is being told repeatedly thatother people would kill themselves inour circumstances, because we are aburden to others.Normal is being told repeatedly thatyour child should never have beenborn, because they are a burden toothers.18

Normal is the UN Convention on the Rights of Disabled People.Normal is being proud of who we are.Normal is the mother who will do anything to support her child.Normal is the man who battles tirelessly for his partner’s rights.Normal is being recognized as the expert on our own needs.Normal is disabled people and carers setting up our ownorganizations to provide services and activities.Normal is the school with the effective anti-bullying policy.Normal is the college students who welcome theopportunity to study alongside disabled students.Normal is the support worker who opens up a whole newworld to the person they are working with.Normal is the security guard who does everything they canto help you get into their building.Normal is the gallery manager who is happy to be challenged about access, and is neverdefensive.Normal is the council officer who picks you up and takes you to a meeting in their own car.Normal is the receptionist who asks if your assistance dog would like a bowl of water.Normal is the pub where every worker’s had Disability Equality Training.Normal is the broadcaster headhunting disabled presenters.19

Normal is the website that is written in easy words, and includes BSL videos.Normal is the company that provides free BSL lessons for all its employees.Normal is the traditional disability charity that has challenged itself to change.Normal is the young mother who asks if you need help to load your wheelchair in the supermarketcar park.Normal is the friend who asks if your assistance dog would appreciate a walk.Normal is the neighbour who asks if they can fetch your shopping with their own.Normal is realizing that together we are strong.Normal is knowing that together we can change our world.20Digital image by Ju90

Summary refleconsPlanning and holding these three events was a profound learning experience for many ofus who were involved. As a group of non-disabled people the E13 People Utd planninggroup made some early assumptions about the structure which were challenged by thereps from disability groups we first consulted - a salutary reminder not to makeassumptions but to listen and consult with the real experts from the beginning whendoing any kind of community work! We were fortunate indeed to have active input fromAct Up!, Ju90, The 3Hs, and Hope and a Future in shaping the plans and putting thethree evenings together as a linked series which could also each stand on its own.The events themselves felt like a rich mix of personal experiences, gut feelings andconsidered views, and were approached by all participants with a moving opennesswhich allowed real learning to take place. The proactive hosting by the Harold RoadCentre as our venue was a key factor in the success of the evenings. Inspirationalschool-children’s singing set a positive tone at the start, while the sometimes disturbingand demanding dramatic performances (from Ju90 as well as Act Up!) and personalstories prevented us from settling into cozy niceness. As participants in the ’café-style’discussions we had to dig deep, listen carefully, and be prepared to put ourselves ’outthere’ - which paid dividends for our learning, witnessed in the tablecloth records onpages 5, 7 and 9.E13 People Utd hopes that this record of the events will add to the momentum fordisabled people’s rights and access which absolutely must be part of the legacy of theLondon 2012 Paralympic Games, held a couple of miles from our own venue less thana year previously. The views, hopes and expectations expressed in the record speakfor themselves as ’recommendations’ for us as individuals, families, groups,organisations, authorities and communities.If you or your group/organisation want to continue working on becoming more disabledfriendly,you may find the directory which follows a useful resource.21

RESOURCE DIRECTORYThis directory is intended to provide contact details for organisaons which might be ableto help you, your family, group or community become more disabled‐friendly. Most areNewham‐based organisaons, but we have included some naonal bodies. We hope youfind it a useful signposng resource.AcountAdvisory Council Opening Up Newham Treatment.From grassroots to consultaon and commissioning, ACOUNT strives to raise concerns and resolve issues onbehalf of all those affected by substance misuse in Newham.Chair—Charlie Barlex—cbarlex@gmail.com Secretary— Sally Day—sally.day.2012@gmail.comAcon & Rights of Disabled People in NewhamARDPN is a cross impairment disabled people's organisaon promong equality for disabled people who liveor work in the London Borough of Newham.c/o Community Links, 105 Barking Road, Canning Town, London E16 4HQaconandrights@btconnect.com 0207 473 9655Act Up! NewhamCommunity performance group. Plaistow, Newham act‐up@live.co.uk 075 7086 0672Churches for AllDisabled people inspiring faith without limits.Churches for All is a network of UK Chrisan disability organisaons working in Partnership with Premier Lifepart of the Premier Chrisan Media group.hp://churchesforall.org.uk/ makeadifference@churchesforall.org.ukDealindNaonal Centre for Dealindness.John and Lucille van Geest Place, Cygnet Road, Hampton, Peterborough PE7 8FD 017 3335 8100Disability Reps GroupThe Disability rep forum is pan‐impairment service user led group where a lot of the members arefacilitators for other groups, coming together to bring about change for disable people at local level, inhealth and social care as well as making sure inclusion happens for all and breaking isolaon.The members are also Directors of Newham Associaon of Disabled People and Alliessarifa.patel@hotmail.co.uk or chrisne@guidemail.co.uk 077 2373 9221Greenhill GroupThe Greenhill Community Group was formed by service users from The Greenhill Centre for people withphysical impairments in Manor Park when it closed in 2011 to help keep friends in touch with each other.We now keep people aware of issues around disability, both locally and naonally, and advocate formembers who are having problems with service provision. Membership is free and open to anyone with aninterest in issues around disability. angus.davie@gmail.com22

Hope And A FutureA local network asking the queson “if Jesus said the ‘First shall be last and last shall be first in the Kingdomof God’, how should that change the way the Church treats disabled people?”Alison Orphan alisonorphan@hotmail.comInclusive ChurchAnglican organisaon commied to working for a church that is welcoming and open to all.(type ‘disabled’ into their search field and see what comes up!)hp://inclusive‐church.org.ukoffice@inclusive‐church.org.ukNewham People First GroupNewham People First is an organisaon run by and for people with learning difficules in Newham.all@newhampeoplefirst.org.uk 020 8519 9001 — ask for Ameet , loleta, Yasmin or MichalNuLife User GroupThe group facilitates customer engagement and co producon regarding service redesign.Contact person: Rose Hassan email: rose.hassan@newham.gov.uk Tel. 0203 373 4592Older Peoples Reference GroupThe Older People's Reference Group is a group of older people designed to promote the consultaon of olderpeople and their engagement in the design and delivery of local services for them.For more info, meeng dates and locaons contact Chloe Lyons ‐ Newham OPRG Coordinator on 0207 2415902 or chloe.lyons@ageukeastlondon.org.uk.www.ageuk.org.uk/newham/news‐‐campaigns/the‐older‐peoples‐reference‐groupPowerhousePowerhouse aims to empower women with learning disabilies physically and mentally to get them access tomainstream services by providing acves/sessions. Email:info@thepowerhouse.org.ukc/o St.Luke's Community Centre, 85 Tarling Road, Canning Town, London E16 1HN.www.thepowerhouse.org.uk info@thepowerhouse.org.uk 020 7366 6338Real Life ParenngSet up by a group of parents and carers of disabled children in order to address key gaps in services.c/o Children & Families Resource Centre, 140 Balaam Street, London E13 8RDrlpservices@hotmail.co.uk 020 8552 1364Together! 2012A social enterprise in Newham, led by four locally based disabled arsts under the arsc direcon of Dr JuGosling aka ju90, to make Newham an internaonal centre of excellence for Disability Arts as part of the 2012Legacy. Together! will also be offering consultancy and training services to arts organisaons, and helping tostrengthen exisng Disability Arts groups in East London and to create new ones.90A Tudor Road, London E6 1DR 07973 252751 www.together2012.org.uk info@together2012.org.uk23

Contact UsE13 People Utd and E13 Learning Communityc/o Plaistow Primary School & Children’s CentreJuncon Road, London E13 9DQTel.: 079 2010 1740 E‐mail: info@e13LC.org Web: www,e13LC.orgAct Up! NewhamTel: 075 7086 0672Email: act‐up@live.co.ukJu90 & Together! 2012mail@ju90.co.uk www.ju90.co.ukc/o 90A Tudor Road, London E6 1DR Tel.: 07973 252751E‐mail: info@together2012.org.ukWeb: www.together2012.org.ukHope And A Futurealisonorphan@hotmail.comThe 3Hsc/o St.Mark’s Centre, Tollgate Rd,London E6 5YA Tel.: 078 0518 1084E‐mail: the3hs@hotmail.comWeb: www.the3hs.co.ukThe Church Urban Fund NearNeighbours programme whichfunded the 3 events and thispublicaon brings peopletogether in religiously andethnically diverse communies,creang friendships, buildingrelaonships of trust and helpingpeople to transform theirneighbourhoods together.Further info from:tel. 020 7898 1508E13 Learning Community Ltd is a local charity workingin partnership with community groups, schools andstatutory authories to make the Plaistow and UptonPark area an excellent and inclusive living and learningenvironment for children, young people, and families.Our community acon forum, E13 People Utd works tobuild community life and grow relaonships betweenpeople of different cultures, faiths and generaons.Join in!Funded by24Charity no.1138176 Company No.7118908