Individuality/Inclusivity by Hazzel Tabernilla

I ndi v idua l ity n c l u s i v i t y H a z z e l Ta b e r n i l l a

C o ntents

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I ntro du ctio n

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I ndi v idua l ity

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I ndependen c e

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Lo n el i n e ss

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Menta l H e a lth

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La c k of Awa ren e ss and training

T h e s e a r e t h e m e s s a g e s, t h o u g h t s, a n d f i n d i n g s o f Hazzel, a lo c a l re s ident of Ca mden a nd a citizen so c ia l s c ie nt i st.

Hazzel c o ndu cted re se a rc h a b o u t h ow the Ca mden C o m m u n i t y We a l t h F u n d c a n be m o re a c c ess i ble a nd i n c lus i ve to dis a bled a nd n eu ro di vergent re s idents .

Th is re se a rc h i nvo lved o n e - h o u r, s e m i - s t r u c t u r e d i nter v iews w h ic h were transcribed and analysed.

I nter v iewees h ave been g i ven pseudo ny ms to en su re th at th ey rema i n a n o ny m o us .

Fr o m i n t e r v i e w i n g p e o p l e w o r k i n g w i t h , o r p a r t o f, th e n eu ro di vergent a nd d i s a b l e d c o m m u n i t y, k e y th eme s identi f ied were i n d i v i d u a l i t y, i n d e p e n d e n c e, l o n e l i n e s s, m e n t a l h e a l t h , a nd la c k of awa reness a nd training.

These themes will be explo red i n th is zi ne.

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I n th e U n ited Ki n gdo m . . .

A s o f 2 0 2 3, t h e r e w e r e 5.1 m i l l i o n d i s a b l e d p e o p l e i n e m p l o y m e n t i n t h e U K, a n i n c r e a s e o f o v e r 2 m i l l i o n s i n c e 2 0 1 3.

F o r p e o p l e a g e d 1 6 t o 6 4, d i s a b i l i t y e m p l o y m e n t w a s 5 3.6 % i n J u l y t o J u n e 2 0 2 3, c o m p a r e d t o 8 2 . 5 % f o r n o n-dis a bled pe ople.

Dis a bled wo rkers a re m o re l i kely to be sel f-employed c o mpa red to n o n-dis a bled wo rkers .

I n 2 0 2 3/2 0 2 4, 1 3. 3 % o f d i s a b l e d wo rkers were sel f-employed.

Th e dis a bi l ity employ ment g ap i n c re ase s w ith age. ( O f f i c e o f N a t i o n a l S t a t i s t i c s, 2 0 2 3)

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I n th e B o ro ug h of Ca mden . . .

8. 3 % o f r e s i d e n t s i n C a m d e n w e r e ‘d i s a b l e d a n d l i m i t e d a l o t ’ i n 2 0 2 1.

A n a d d i t i o n a l 9.4 % o f r e s i d e n t s w e r e i d e n t i f i e d a s ‘d i s a b l e d a n d l i m i t e d a l i t t l e’. ( C e n s u s 2 0 2 1, Of f ic e of Natio n a l Statistic s)

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I ndi v idua l ity

T h r o u g h o u t m y i n t e r v i e w s, t h e r e’s b e e n a n emph as is o n seei n g dis a bled / n eu ro di vergent pe ople as i ndi v idua ls .

Dis a bled / n eu ro di vergent pe ople feel th at they t e n d t o b e l a b e l l e d a n d p u t i n t o a b o x, w h e r e t h e y a re tre ated the s a me as th o se w ith the s a me disa bi l itie s as th em w ith o u t c o n s ideratio n th at e a c h perso n is a n i ndi v idua l w ith di f ferent challenges.

[ W e s h o u l d b e] lo o k i ng at

[ d i s a b le d p e o p le] a s i n d i v i d u al s r at h e r t h a n t h e c h al le ng e s t h at t h e y b r i ng .

Amanda Supp o rt wo rker a nd pa rent

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Eve n i f a p e rs o n h a s t h e s a m e d i s a b i l i t y a s a n o t h e r, t h e y m a y e x p e r i e n c e d i f f e r e n t di f f ic u ltie s . Th ey w i l l a ls o h ave va rio us p r e f e r e n c e s f r o m o n e a n o t h e r, l i k e h o w t h e y may prefer to c o m mu n ic ate a nd s o c ia l ise w ith oth ers - j ust l i ke a ny typic a l perso n wo u ld.

Some of them may s h ar e s i m i l ar i t i e s, but t here is so m u c h co m p lex i t y …

T h e y ’r e e ac h l i k e a n e nt i r e ly d if f e r e nt u n i v e r s e to d e al w i t h .

A ndrew SEND te a c h i n g ass ista nt

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Th ese la bels p u t o n a dis a bled perso n h ave led to genera l ised s o lu tio n s to th ei r m o re c o mplex pro blem . Th is may o r may n ot h elp the pers o n with their challenges.

T h e r e f o r e, i t i s i m p o r t a n t t h a t e a c h d i s a b l e d / n eu ro di vergent perso n re c ei ve s supp o rt th at is spe cia l ised fo r thei r n eeds .

I n d i v i d u al i t y al s o co m e s d o w n to t h e s u p p o r t [ d i s a b le d p e o p le] ar e p r o v i d e d .

W h e t h e r fo r w o r k , fo r s c h o o l, o r t h e i r d a i ly act i v i t i e s, i t i s i m p o r t a nt fo r t h e i r s u p p o r t to be be sp oke and be de sig n e d fo r t h e i n d i v i d u al p e r s o n .

Mary Head of a disability a rts o rg a n is atio n

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Im age 1 – A pic t u re w i t h s ome do o d le s o f t h e c afé a re a i n t h e G r e e n w o o d C e n t r e . A n i n c l u s i v e p l a c e i n K e n t i s h To w n w hich pro v ide s v a r io us dis a bi li t y se r v ice s .

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I ndependen c e F o r s o m e d i s a b l e d /n e u r o d i v e r g e n t p e o p l e, h a v i n g s o me i ndependen c e is i mp o rta nt fo r th em . Ma ny d i s a b l e d /n e u r o d i v e r g e n t p e o p l e, e s p e c i a l l y y o u t h s, tend n ot to be g i ven mu c h i ndependen c e as oth ers a ro u nd th em wo r r y to o mu c h a b o u t thei r wel l bei n g .

T h e y t e n d to k i n d o f n ot g i v e

[ d i s a b le d p e o p le] q u i t e a s m u c h

f r e e d o m a s t h e y p r o b a b ly n e e d at

t h i s ag e a n d s t ag e o f d e v e lo p m e nt.

Ch ristoph Dis a bled yo u th wo rker

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Fr o m h i s w o r k w i t h d i s a b l e d y o u t h s, Ch ristoph o bser ved h ow th ey enjoyed the freedo m th ey were g i ven fo r proje cts a nd a cti v ities th ey to o k pa rt i n .

H e bel ieve s th at g i v i n g them s o me i ndependen c e w i l l h elp th em feel m o re c o nf ident i n th emselve s a nd th ei r a bi l ity to do th i n gs th emselves .

I t h i n k m o s t e n j o y t h i ng s w h i c h g i v e t h e m a l i tt le b i t o f i n d e p e n d e n c e …

They kind of t hr ive t he mo s t w he n

t h e y ’v e g ot t h e r i g ht am o u nt o f l i k e , ‘ d o y o u f e e l l i k e b e i ng t r e at e d a s

a n ad u lt ? ’ b u t w i t h t h e r i g ht le v e l o f s u p p o r t.

Ch ristoph Dis a bled yo u th wo rker

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M a r y, w h o r u n s a d i s a b i l i t y a r t s o r g a n i s a t i o n , a l s o fo u nd th at by g i v i n g h er dis a bled a rtists c re ati ve freedo m a nd g i v i n g th em the i ndependen c e to c r e a t e t h e a r t w o r k t h a t t h e y w a n t, t h e s e a r t i s t s g a i n ed m o re c o nf iden c e i n b oth thei r wo rk a nd i n thei r da i ly l i ve s . Th is h as a l lowed them to be m o re sel f-assu red a nd feel m o re c o nf ident i n th ei r da i ly de cis io n s .

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W e o ft e n f i n d t h at j u s t t h e i d e a t h at t h e y ca n m ak e d e c i s i o n s t h e m s e lv e s e m p o w e r s t h e m .

Mary Head of a disability a rts o rg a n is atio n

Im age 2 – A pic t u re w i t h doodle s of an inclusi ve dance e vent with disabled / ne u ro di ve rge n t pe r f or me rs h e ld by LISA .

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Lo n el i n e ss

A lot of th e so c ia l ser v ic e s i n th e UK h ave b e e n e r o d e d a w a y a n d e v e r s i n c e C O V I D -1 9 l o c kd o w n, p e o p l e h a ve fe l t d i s c o n n e cte d f ro m t h e i r n e i g h b o u r s a n d c o m m u n i t y. T h e p a n d e m i c h as made the i mp o rta n c e fo r better so cia l s e r v i c e s m o re app a re nt. T h i s i s e sp e c i a l l y t r u e fo r a lot of dis a bled / n eu ro di vergent pe ople w h o su f fer fro m lo nel i n ess .

[ D i s a b le d p e o p le] m i g ht s t r u g g le to

m ak e f r i e n d s, s o t h e y h av e n o s o c i al s u p p o r t n e t w o r k s o s u d d e n ly l i k e ,

b e ca u s e o f t h e i r le ar n i ng d if f i c u lt y , i n d i r e ct ly , t h e y m i g ht b e d e v e lo p i ng

a c e r t a i n k i n d o f s e n s e o f i s o l at i o n o r m e nt al h e alt h p r o b le m s .

Ch ristoph Dis a bled yo u th wo rker

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E v e n n o w, h e h a s v e r y f e w f r i e n d s …

S o c i al i s i ng a n d u n d e r s t a n d i ng t h e s o c i al c u e s h a s alw a y s b e e n q u i t e d if f i c u lt fo r h i m .

Amanda Supp o rt wo rker a nd pa rent

S o me may a lso either f i nd it di f f ic u lt to g o to pla c e s of feri n g s o c ia l a cti v itie s o r to make ti me fo r them . Th ey m ig ht a lso f i nd it di f f ic u lt to c o m mu n ic ate a nd s o cia l ise w ith others w h ic h c a n wo rsen th ei r sen se of lo n el i n e ss .

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A d d i t i o n a l l y, t h e l a c k o f s o c i a l a c t i v i t i e s f o r dis a bled / n eu ro di vergent pe ople over 25 ye a rs o ld is concerning.

I n m y i n t e r v i e w w i t h S y l v i a, s h e s t a t e d h o w t h e r e is a la c k of a cti v itie s fo r h er so n w h o is n ow over 25 ye a rs o ld. Sh e mentio n ed h ow her so n used to attend di f ferent c lu bs h owever he c o u ld n o lo n ger attend th em as th e se were o n ly fo r th o se below 25 ye a rs o ld.

N o w, s h e f e e l s t h a t h e d o e s n ’ t h a v e m u c h t o d o a nd do es n’t h ave th e c h a n c e to so cia l ise w ith o t h e r s . D u e t o h i s d i s a b i l i t y, h e t e n d s t o g e t i r ritated w hen ever he do e s n’t h ave a str u ct u re to h i s d a y, s o h a v i n g n o c l u b s t o a t t e n d , s h e f e a r s t h a t h e’ l l c o n s t a n t l y g e t b o r e d a n d i r r i t a t e d .

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Th is senti ment was e c h o ed by Ch ristoph w h o mentio n ed th at h e lets s o me mem bers pa rticipate even i f th ey ’re o lder th a n 25 as they h ave n ow here else to g o a nd n oth i n g to do.

H o w e v e r, h e a l s o k n o w s t h a t h e’ l l h a v e t o event ua l ly let th em g o to make spa c e fo r yo u n ger mem bers to jo i n .

T h e y ar e k i n d o f c u t o f f at 2 5.

T h e r e ’l l b e acc e s s to al l k i n d s o f

ot h e r ar e a s o f s u p p o r t t h at fam i l i e s o r y o u ng p e o p le g e t w h i c h k i n d o f

d r o p s o f f at 2 5 … T h e r e ’s r e al ly n ot a

lot fo r t h e m aft e r 2 5 a n d i t ’s v e r y s ad .

Ch ristoph Dis a bled yo u th wo rker

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Menta l H e a lth Menta l h e a lth is a n e ssentia l topic to dis c uss due t o t h e c u r r e n t m e n t a l h e a l t h c r i s i s . C o m o r b i d i t y, h av i n g m o re th a n o n e medic a l c o nditio n h appen i n g a t t h e s a m e t i m e, i s p r e v a l e n t i n d i s a b l e d / n eu ro di vergent c o m mu n ities . S o me h ave thei r dis a bi l ity w h i le a ls o str u g g l i n g w ith thei r menta l h e a lth w h ic h c a n exa c er bate thei r c h a ll e n g e s . H o w e v e r, f o r d i s a b l e d / n e u r o d i v e r g e n t p e o p l e, t h e i r m e n t a l h e a l t h t e n d s t o b e o v e r l o o k e d .

P e o p l e r e c o g n i s e a d i s a b l e d p e r s o n ’s l e a r n i n g d i f f i c u l t i e s, b u t t h e y d o n ’ t r e c o g n i s e t h a t t h e s e pro blems c o u ld a lso be ass o c iated w ith th ei r menta l h e a lth .

P e o p le k i n d o f r e co g n i s e t h e m a s le ar n i ng d i s a b le d o r a u t i s t i c a n d

d o n’t r e co g n i s e t h e m a s h av i ng a n y k i n d o f m e nt al h e alt h c h al le ng e s .

Ch ristoph Dis a bled yo u th wo rker

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Menta l h e a lth is a ls o l i n ked to lo nel i ness . As prev io usly mentio ned, dis a bled / n eu ro di vergent pe ople may h ave di f f ic u ltie s c o m mu n ic ati n g a nd so cia l is i n g, c aus i n g th em to h ave fewer friends a nd supp o rt systems .

Th is le ads to lo n el i n e ss w h ic h c a n c ause p o o r menta l h e a lth as they h ave n o o ne they c a n tr ust to supp o rt them .

It is essentia l to mentio n th at pa rents of dis a bled / n eu ro di vergent pe ople a lso experien c e p o o r m e n t a l h e a l t h . F o r a l o t o f p a r e n t s, i t i s d i f f i c u l t t o j u g g l e w o r k, c a r i n g f o r t h e i r c h i l d , a n d c h o r e s . A s a r e s u l t, t h e y t e n d n o t t o h a v e a n y f r e e ti me fo r themselves . Th is c ause s lo nel i ness due to t h e i r l a c k o f s o c i a l i s at i o n, w h i c h c a n re s u l t i n p o o r menta l he a lth .

T h e y h ad s af eg u ar d i ng co n c e r n s fo r m y s o n, b u t t h e r e w e r e n o co n c e r n s fo r m e. I g ot n o s u p p o r t.

Amanda Supp o rt wo rker a nd pa rent

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Sylv ia a lso feels th at it is i mp o rta nt th at m o re ser v ic e s a nd better supp o rt a re prov ided fo r pa rents w ith a dis a bled / neu ro di vergent c h i ld.

A m a n d a, w h o w o r k s w i t h p a r e n t s o f d i s a b l e d / n e u r o d i v e r g e n t c h i l d r e n , m e n t i o n e d , “ We o f t e n g e t t h e n e w p a r e n t s t h a t c a l l u s a r e s o d i s t r a u g h t, w e a l l k n o w t h e y j u s t n e e d t o o f f l o a d .”

T h e r e f o r e, i t i s e s s e n t i a l t o b o t h c o n s i d e r t h e menta l h e a lth of th e dis a bled / neu ro di vergent p e r s o n a n d t h e i r p a r e n t o r c a r e r.

A c o n t r i b u t o r t o i m p r o v i n g o n e’s m e n t a l h e a l t h is h av i n g i ndependen c e to make key de cis io n s .

A n exa mple fro m WH O fo u nd th at pe ople w ith menta l h e a lth c o nditio n s tend to be fo rc ed i nto spe ci f ic c a re pathways w h ere th ey didn’t h ave a s a y i n t h e i r o w n r e c o v e r y, s h a t t e r i n g t h e i r c o n f i d e n c e t o m a k e b a s i c d e c i s i o n s ( Wo r l d H e a l t h O r g a n i z a t i o n , 2 0 2 2) .

Th is is w hy it is i mp o rta nt to h ave a ba la n c e bet ween th e a m o u nt of g u ida n c e a nd freedo m to h elp b u i ld a p e r s o n ’s s e l f - c o n f i d e n c e .

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Im age 3 – A pic t u re w i t h do o d le s be f o re t h e LISA da nce e ve n t.

Im age 4 – A pic t u re w i t h do o d le s o f t h e G re e n wo o d C e n t re , a f ac i li t y w hich de li ve rs dis a bi li t y-f r ie nd l y ser v ice s and act i v i t ie s.

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La c k of Awa ren e ss a n d Tr a i n i n g

A l t h o u g h m a n y p l a c e s e m p h a s i s e i n c l u s i v i t y, dis a bled / neu ro di vergent pe ople sti l l tend to be left o u t o r t r e a t e d u n f a i r l y. A n d r e w, a t e a c h i n g a s s i s t a n t w h o l o o k e d a f t e r S E N k i d s, s p o k e a b o u t h o w S E N c h i ld re n we re t re ate d i n t h e i r s e c o n d a r y s c h o o l . Eve n i f th e se te a c h ers were tra i n ed o n h ow to te a c h SEN c h i ld re n, t h ey d id n ot f u l l y p u t w h at t h ey ’ ve l e a r n e d i nto pra ctic e.

M a n y o f t h e t e ac h e r s w o u l d d i s m i s s

t h e fact t h at s o m e s t u d e nt s h ad S E N a n d w o u l d t r e at t h e m t h e s am e a s e v e r y ot h e r s t u d e nt.

A ndrew SEND te a c h i n g ass ista nt S i m i l a r l y, A m a n d a m e n t i o n e d h o w w h e n h e r s o n w a s i n pri ma r y s c h o o l, s h e wo u ld i nfo rm th em a b o u t h is s p e c i f i c n e e d s . H o w e v e r, t h e s c h o o l d i d n ’ t l i s t e n a n d bla med it o n her s o n a nd h er fo r bei n g diso rg a n ised.

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I w a s g i v i ng a lot o f i n fo r m at i o n to t h e s c h o o l, a n d t h e y w e r e n’t

n e c e s s ar i ly u s i ng i t w h i c h i s q u i t e u p s e tt i ng . A n d w h e n t h e y m ak e

co m m e nt s t h e n i n p r o g r e s s d a y s a n d y o u t h i n k , w e l l, if y o u ’d h av e r e ad t h e i n fo r m at i o n I g av e t h e n y o u ’d u n d e r s t a n d w h y t h at h a p p e n e d .

Amanda Supp o rt wo rker a nd pa rent Sh e c o nti n ued by tel l i n g me th e sto r y of h ow h er so n was later tre ated du ri n g h is apprentic e s h ips . On e of th e jo bs h e to o k o n was a c o n str u ctio n apprentic es h ip w h ere h e h o p e d h e wo u ld l e a r n v a r i o u s s k i l l s i n c o n st r u ct i o n, h owever th ey did n ot supp o rt h i m du ri n g h is wo rk n o r tau g ht h i m a ny ki nd of ski l l . Sh e mentio ned h ow h e c a me h o me o ne day a nd to ld h er th at h e was o n ly a s s i g n e d t o p i c k u p c a b l e t i e s f o r t h e w h o l e d a y.

H e w a s j u s t u s e d a s c h e a p l a b o u r.

W e p r e p ar e t h e y o u ng p e o p le fo r

g o i ng o u t to w o r k , b u t w e ’r e n ot p r e p ar i ng t h e e m p lo ye r s .”

Amanda Supp o rt wo rker a nd pa rent

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F o r o r g a n i s a t i o n s a n d e m p l o y e r s, t h e r e a r e s o m e c h a l len ges th at so me may fa c e even w hen tr yi n g to be m o re i n c lus i ve. H ere a re so me sug ge stio n s fo r en su ri n g th at o rg a n is atio n s a re i n c lus i ve: 1. B e i n g c l e a r a b o u t w h a t t y p e o f a c c o m m o d a t i o n s a re ava i la ble fo r dis a bled a nd p otentia l employees – s o meti mes dis a bled pe ople a ren’t su re a b o u t the type o f s u p p o r t t h e y c a n a c c e s s, s o t h e y w o r r y a b o u t a s ki n g f o r h e l p. T h e r e f o r e, h a v i n g a l i s t o f e x a m p l e s c a n h elp a pers o n w ith aski n g fo r a c c o m m o datio n n eeds .

2. En su ri n g th at the supp o rt dis a bled employee s ask fo r c o nti n ues to be prov ided th ro u g h o u t thei r e mp l oy m e nt.

3. I t i s i m p o r t a n t t o b e f l e x i b l e w i t h t i m e a n d w o r k lo c atio n as dis a bled pe ople may need to prio ritise app o i ntments o r n eed to wo rk fro m h o me o n c erta i n days due to thei r c o nditio n .

T h e y w a nt to g e t i t r i g ht, a n d

s o m e t i m e s t h e f e ar o f g e tt i ng i t w r o ng s to p s t h e m .

Sta c ey SEND employ ment of f ic er

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Referen c es

O f f i c e f o r N a t i o n a l S t a t i s t i c s . (2 0 2 3) .

H o w l i f e h a s c h a n g e d i n C a m d e n : C e n s u s 2 0 2 1. [ o n l i n e ] Av a i l a b l e a t : h t t p s : //w w w. o n s . g o v. u k / v i s u a l i s a t i o n s /c e n s u s a r e a c h a n g e s / E0 9 0 0 0 0 0 7/ [ A c c e s s e d 1 0 S e p. 2 0 2 4] .

A d a m, M . , B r o w n , A . a n d D i o n g , J . (2 0 2 3) .

Employ ment of dis a bled pe ople 2022. [o n l i ne] G O V. U K . Av a i l a b l e a t : h t t p s : //w w w. g o v. u k /g o v e r n m e n t/s t a t i s t i c s /t h e - e m p l o y m e n t - o f - d i s a b l e d - p e o p l e -2 0 2 2 /e m p l o y m e n t - o f - d i s a b l e d - p e o p l e -2 0 2 2# a b o u t -t h e s e - s t a t i s t i c s [ A c c e s s e d 1 0 S e p. 2 0 2 4] .

Wo r l d H e a l t h O r g a n i z a t i o n . (2 0 2 2) .

Au to n o my i n H e a lth de c is io n-maki n g - a Key to R e c o v e r y i n M e n t a l H e a l t h C a r e . [ o n l i n e ] Wo r l d H e a l t h O r g a n i z a t i o n . Av a i l a b l e a t : h t t p s : //w w w. w h o . i n t/n e w s - r o o m /f e a t u r e - s t o r i e s /d e t a i l /a u t o n o m y - w a s -t h e - k e y -t o - m y - r e c o v e r y [ A c c e s s e d 1 0 S e p. 2 0 2 4] .

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CAMDEN COUNCIL CITIZEN SCIENTISTS-IN-RESIDENCE 2023-2024 Following many successful collaborations, including the Good Life Euston and Euston Young Voices projects, Camden Council have teamed up with the Institute for Global prosperity at University College London to deliver an innovative ‘Citizen Science-in-Residence’ programme for the year 2023-2024.

This zine is one of the outputs from this programme.

Seven local residents were employed by Camden Council to conduct research informed by their own lived experience for the benefit of developing new council policy ideas and initiatives. As part of their residency at the council, the cohort completed a bespoke 12-month training programme with the UCL Citizen Science Academy.

Five of the citizen scientists-in-residence were connected with the development of the council’s new Community Wealth Fund Initiative and the remaining two conducted research to help inform the Tenant Engagement Programme. Through practical training and supported fieldwork using qualitative research methods, the work done by the citizen scientists-in-residence is part of a wider goal to promote citizen-led policy making and connect residents with local government.

ACKNOWLEDGEMENTS Thank you to UCL and Camden Council for giving me the opportunity to work on this special project and for helping me develop into a Citizen Scientist. Thank you to Joseph Cook for the support and training throughout the whole year. This project would not be possible without your guidance. And thank you to everyone in my Citizen Science cohort for all the laughs, you have definitely made this whole experience more interesting and enjoyable.

The UCL Citizen Science Academy would also like to thank all those at Camden Council that provided support for this project, including those in the Participation and Community Wealth Fund teams. Additionally we are grateful for the input from a variety of local organisations who have hosted us throughout the year, including Luminary Bakery, Google, Training Link and Somers Town Community Association.

CONTACT citizenscienceacademy@ucl.ac.uk @glo_pro @glo__pro

For more zines by our citizen scientists, please visit www.prosperity-global.org/citizen-science-academy