PERKY IS CO-LED BY A PAIRING OF WOMEN ONO AND HOLLY, ONE WITH A LEARNING DISABILITY AND ONE WITHOUT
MISSION & VISION FOR PERKY PERKY started in 2016. It is a project conceived by Holly Stratton and Ono Dafedjaiye. They are a two woman team, one of whom is a woman with a learning disability (WWLD) and one is a woman without a learning disability. They both have extensive experience working in the arts, and met at Heart n Soul, an arts charity profiling the power and talent of people with a learning disability.
Ono and Holly wanted to change attitudes towards WWLD and to influence decision making and planning in the health and social sectors, which impact heavily on the lives of WWLD.
They wanted... WWLD: w om en with learning disabilitie s PER KY wan t t o emphasise that their de finitio n o f wo men i nc ludes everyone who identifies as a wo ma n.
WWLD TO BE HEARD AND RESPECTED TO CHALLENGE PERCEPTIONS OF WWLD WWLD TO HAVE MORE CONTROL OVER THEIR LIVES AND TO BE GIVEN THE OPPORTUNITY TO MAKE INFORMED CHOICES WWLD TO HAVE SAFE SPACES TO TALK TO PEOPLE WHO ARE LIKE THEM
BACKGROUND AND RESEARCH Ono and Holly undertook desk based research and made a number of field visits to service providers and campaigns. This including Supported Loving, championing the rights of people with learning disabilities to have love in their lives, and a conference on Relationship and Sex Education in special schools, run by the Council for Disabled Children.
Holly and Ono’s combined life experiences and research identified a gap in knowledge about and representation of WWLD in society in general and within the women and girls’ sector.
Here are their findings:
T h e r e is a ga p in t ra ini ng for suppor t wor kers ar ound wome n ’ s issues r elati ng to W WL D LD s u pp ort se rvic e s someti mes hav e women’s gr oups but prov i si on i s r ar e T he re n e e d s t o be more suppor t fr om support wo r ke rs, f rie n d s a n d fami ly encour agi ng adults wi th LD t o ha ve adult relati onshi ps M a n y WWLD ha ve had extreme exper i ences ar ound i s s u es re la t in g t o t hei r bodi es, to thei r b ody i mage a n d in se xua l re la t io nshi ps, parti cular ly wi th men A l t hough in t e rse c t ional femi ni sm, femi ni sm whi ch i l lust ra t e s t he in terplay b etween any ki nds of di sc rim in a t ion , ha s i mprov ed repr esentati on for m a n y p e op le , t he re i s sti ll poor repr esentati on of W WL D T h e r e a re ve ry f e w, if any, spaces for W WL D to talk a bout t he ir bod ie s wi th other women li ke them T h e re a re a n umbe r of myths around W WL D usi ng c ontr acepti on Lot s of p eople talk for WWL D
WHAT PERKY DID PERKY created an organisation where WWLD are represented across all areas, co-led by Ono and Holly.
PERKY wanted to create an organisation where WWLD could play key roles in decision making at all levels, to ensure WWLD were heard and genuinely involved. PERKY’s advisory board was set up to include women with a range of life experiences. It included two WWLD, one of the women is non verbal and was supported by her mother, who was on the Advisory Board in her own right.
PERKY HQ is a Community Interest Company, a special form of non-charitable limited company, which exists primarily to benefit a community or with a view to pursuing a social purpose, rather than to make a profit for shareholders. PERKY HQ Directors included one WWLD, Ono Dafedjaiye and two without, Holly Stratton and Rachel Bate.
The Advisory Board started with a visioning day which was facilitated by an Occupational Therapist. The board tested ways of ensuring everyone could participate effectively in meetings and other communications. This included creating inclusive, peer to peer focused spaces with more interaction, holding meetings over a longer period of time to allow space to share ideas, and using different tools of expression, such as drawing and movement. This was used to set PERKY’s pro-cesses and ways of working.
This model of working offers space for WWLD to learn professional skills and self advocacy skills, as well as providing role models to in-spire WWLD to try different things and push the boundaries of current social expectation.
PERKY successfully raised funding from Paul Hamlyn Foundation and The National Lottery Awards for All programme. PERKY were represented at funder events and a two day residential for entrepreneurs. There were no other WWLD at these events.
PERKY HQ HOW ONO & HOLLY WORK TOGETHER A key component of PERKY HQ was the working relationship between Holly and Ono. They were close friends for four years and knew each other very well before they formed PERKY. This friendship informed the thinking behind setting up PERKY and the necessity of a WWLD working alongside a woman without.
Ono and Holly understood the need to create an equitable model of power sharing and decision making. This was against a backdrop of broader societal inequality and years of austerity measures.
Setting up cohesive ways of working was time consuming and needed to be included in all aspects of planning and time scheduling. Bespoke access to support and care needed to be included to make this happen properly and needed to be undertaken by an access worker, not as additional and sometimes conflicting tasks for PERKY directors.
PERKY was also confronted with financial constraints. Both Holly and Ono were ambitious and wanted the project to reflect progress in their careers and to be paid for it. However, the UK’s benefits system is increasingly unfriendly and inflexible. It can be extremely complicated and financially risky for a person on disability benefits and Universal Credit to experiment with new ways of working and earning a living. In addition, many people who are moving from long-term benefits to financial independence through work may need budgeting training and support, a service which can be hard to find.
PERKY WORKSHOPS PERKY developed workshop models alongside a learning disability facilitator, following specific research with disabled feminist groups, trauma therapists and learning Makaton.
HATCHED AT THE ALB ANY DEPTF ORD 2016 T h e s e we re t he f irst workshops PER K Y deli v ered. T h e y we re a we e k of workshops followed by a publi c e v e n t . Holly a n d On o worked wi th 6 women, wi th and wi t h o u t a le a rn in g d isabi li ty. Wor kshops b egan the p r o c e ss of c re a t in g safe spaces to talk ab out seri ous i s s u e s a f f e c t in g wom en, one wor kshop i ncluded c r e a t in g a bra c olle c t i on and bra tr yi ng sessi ons.
LONDON S YMPHONY ORCHES TRA W ORK SHOP 2017 A m u l t ise n sory a rt s acti v i ty for young people wi th c o m p le x a n d m ult ip le learni ng di sabi li ti es to expr ess t h e m se lve s. ‘ De sign Your Own Badge’ an opportuni ty t o t r y som e t hin g on y our own and i nspi re people, p a r t o f LSO Disc ove ry Make Musi c D ays.
B ARBIC AN W ORK SHOP 2017 T h i s w a s a p ublic d rop i n to form part of T o u r e t t e she ro Pit Pa rty. PER K Y collab or ated wi th a r t i s t Millie F ord e t o experi ment usi ng sensory ar ts m a t e ria ls t o c re a t e a safe space for par ti ci pants t o e x pre ss t he m se lve s, openi ng up ways to hav e a d e e p er c on ve rsa t ion .
WORKSHOPS 1 2019 4 X WORKSHOPS A set of four workshops for WWLD and their carers. Women were recruited to these workshops through letters to service providers and word of mouth through arts and disability networks. Activities were decided by the group and entitled ‘Self Image; how we see and feel about ourselves’. They covered body awareness, identity, health and ‘what we want to say to the world’. Special attention was paid to testing safe spaces, where WWLD could talk about taboo subjects, scary things that had happened to them and their wants and desires. All workshops happened in the same space in Canada Water. PERKY added rugs, lamps, flowers and materials to make self-sooth kits.
WORKSHOPS 2 2019 4 X WORKSHOPS The group decided they needed more space to find out about how their bodies worked and about womanhood. Workshops included trips out to venues including the Vagina Museum, a Bra fitting at Rigby and Peller and Sh!!!! the Feminist Sex Shop. One workshop was held at a supported living community for WWLD in Watford. Over 11 women and 2 carers came to the workshop. Women who knew each other and who felt comfortable in their own environments were able to talk more confidently about their bodies and intimate and scary feelings and experiences.
PUBLIC SPEAKING ENGAGEMENTS AND TRAINING
BREWING IN THE BASEMENT FESTIVAL @ BARBICAN ARTS CENTRE 2019 Ono and Holly did a live Question and Answer session on stage, where they shared their hopes and dreams for PERKY and the issues they wanted to think about. Following this PERKY was featured in a review in the Guardian and in the Time Out magazine’s 100 inspiring women.
PLAN INTERNATIONAL UK PERKY led a consultation for Plan International UK, a not for profit organisation, advancing rights for children and equality for girls. Plan wanted to hear directly from young disabled women about provision they would like to see more of and how this could be applied to examples of day to day life. PLAN were developing more programming for girls in UK and wanted to include girls with learning disabilities. The training was attended by senior management and Plan’s Information Research Manager, and fed into designing the future Plan programme.
PERKY LEARNING A l l P E RKY a c t ivit y n e eds ti me. Ti me to get to know e a c h ot he r. T im e t o c reate a calm space. And ti me t o c o mm un ic a t e wit h each other i n di ffer ent ways. P E R K Y sp a c e s n e e d t o b e safe spaces for ev eryone. P E R K Y works be st when i t’s part of a routi ne. S o m e wome n n e e d suppor t wor kers to help them b e p a r t o f PERKY . Le a r n in g d isa bilit ie s needs to seen thr ough a gender lens. P E R K Y p roje c t s a lwa ys need to i nclude pr oper car e a n d a c c e ss sup p ort f o r ev eryone who needs i t. T h e b e n e f it s syst e m does not reli ably prov i de f l e x i bilit y or suf f ic ie nt suppor t to allow people t o t r y out n e w op p ortuni ti es or ways of wor ki ng, e s p e c ia lly t hose who may fi nd i t more di ffi cult to i n d e p e n d e n t ly a n d sa fely manage thei r fi nances.
-PERKY workshop participant
PERKY FUTURES There is very little user decision making or representation for WWLD. PERKY has shown that: • The experience of being a women and having a learning disability is better understood when WWLD hold key positions in support organisations. • WWLD can run a company, speak at conferences and run work-shops. • PERKY’s way of working can create quality assurance for WWLD. PERKY want to share this story...