Christine McClements
@Chris_McClem
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Following
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Mum of 3 girls, carer to daughter STXBP1, senior civil engineer & advocate for the full equality, inclusion & dignity of disabled persons. Changing Places
Joined July 2018
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It's is Lilia's 16th birthday today 🎂🥳🎉
She is the loveliest and sweetest young lady and we're so proud of her.
Unfortunately Lilia and I are both sick at the moment so will have to leave the big time partying until the weekend.
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My 16 year old severely disabled daughter will never work or be employed.
She is made for higher purposes, like full-blown awesomeness.
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This is my severely disabled daughter Lilia when she was age 4 & in pre-school.
It is little shoulders like these, those of our most severely disabled children, that are expected to bear the weight & brunt of the latest education cuts due to political failure & disfunction here.
Nurseries in special schools are at risk as the Education Authority says it faces an "extremely challenging situation".
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My daughter Lilia has a rare genetic disease causing epilepsy & severe disability.
She'll be economically inactive for life. She'll also be completely awesome for life & I'm proud of her & her work to have more public money spent on disabled ppl to support full & equal lives.
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My daughter has been assessed as having Profound & Multiple Learning Disabilities & she has severe physical disability.
Neither of these things make her less than any other person. She is a full & equal citizen, living her best life on her own terms in a family that adores her.
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I'm a woman with degrees in civil engineering & maths. I've worked for 25yrs in the construction industry.
My severely disabled daughter is expected to lie on disgusting public toilet floors for her toileting & period needs.
I can't enjoy my equality until my daughter has hers.
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1K
To me, my severely disabled daughter is unique, interesting, loving, joyful & absolutely equal to anyone else.
What she is not is second rate, second class, a burden, not worth the time or money.
I'll never ever be on the same page as anyone who sees her in this way.
#MyGirl
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I never imagined when I became mummy to a severely disabled child that I'd have to spend years trying to convince people that my beautiful daughter is worth more than a disgusting public toilet floor for her toileting arrangements.
And even now I can't convince everyone of that.
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Disabled children have the same play needs & rights as any other child and playparks should equitably cater for the play needs of all children, not just some children.
#RespectEveryChildsRightToPlay
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When I am taking my severely disabled 11-year old daughter out of her wheelchair to lay her down on a dirty, disgusting public toilet floor to change her, I really don't care that the building meets building control standards.
I'd rather it met standards of basic human decency.
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Heartbroken to let you all know that Flo passed away yesterday. She collapsed at home and died very suddenly.
We are shocked & devastated 😢💔
#FightingForFlo
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We were on a
@maemurrayfdn
beach day at Cranfield ⛱️ yesterday.
Lilia was out of her wheelchair & into the beach chairs to make it over the sand & down to the sea 🌊
This simple pleasure of feeling and splashing in the water 💕
#Inclusion
#EverybodyEqual
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I don't believe that I'm being unreasonable for not wanting my disabled daughter to have lie down on a disgusting public toilet floor.
In fact, what's unreasonable is to expect me or any parent to accept this for our precious children.
#NoMoreFloors
#EverybodyEqual
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"Bed blockers" are people who are entitled to receive timely and appropriate social care provision from our health AND SOCIAL CARE trusts.
They are not "blocking beds" for the fun of hanging out in our hospitals.
These people are being failed too.
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It's not up to me to explain to service providers why my disabled daughter deserves safety, dignity, equality & inclusion.
The onus is on them to explain to me why my daughter as a full & equal citizen should tolerate danger, indignity, inequality & exclusion.
#EverybodyEqual
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Went to IKEA yesterday. Notices up abt lift being restricted to 2 ppl.
A non-mask wearing family pushed into the lift with us even tho' I asked them not to because of Lilia as a severely disabled child. I was told sure covid is over.
I do worry for CEV & immunosuppressed ppl.
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It is Lilia's 14th birthday today 🎉
I've spent 9 of those years fighting for her rights to safe & dignified toileting & high quality play in playparks...such basic things.
Anyway, today we celebrate the wonderful, amazing, unique Lilia, our beautiful young lady ❤️
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My daughter has very severe learning disabilities but she experiences life on her own level. Her feelings of fun, excitement, joy & happiness are as valid& important as anyone else's. No one should pre-judge what in life is for her.This world is for her as much as for anyone else
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Lilia has a severe propensity to joy & giggling, especially on her favourite play item, the wheelchair swing.
A younger boy watched us getting Lilia into the wheelchair swing & he said he wished he'd a wheelchair too.
#Inclusion
#SharedPlay
#BreakingDownBarriers
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Made use of the
#inclusive
beach equipment at Cranfield Beach ⛱ today provided by
@maemurrayfdn
&
@nmdcouncil
. This equipment makes a trip to the beach possible for us & as you can see Lilia loves the sea 🌊
So many more beaches should have this inclusive equipment & facilities
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Yesterday we were at the first day of the opening of the new playpark at
@CausewayCouncil
's Portrush Recreation Grounds.
Wheelchair swing ✅️
W/chair accessible roundabout ✅️
W/chair accessible trampoline ✅️
Changing places toilet ✅️
Well done to all involved 👏
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Guess who got an unexpected Portrush beach surf day ⛱️ 🏄♀️ with the wonderful
@maemurrayfdn
?
#LastDaysOfSummer
#InclusiveBeach
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Very grateful to the wonderful staff at Bishops Shoes in Coleraine, who happily tried every possible footwear option without giving up until they found a suitable pair to fit Lilia's new splints.
#ItsTheLittleThings
#NewShoes
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Heard from school that Lilia has been elected onto her school council to represent pupils from the communication team.
Councillor McClements 💪
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A couple of years ago I complained about lack of inclusive & wheelchair accessible play equipment at
#HillsboroughForestPark
.
Subsequently a wheelchair swing, flush roundabout, sensory panels & high backed swing seat were added in.
We visited again today. 1/3
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Hi Paulette -I live with my severely learning disabled daughter Lilia & can confirm that she does indeed change the character of the area by making our home more laughter-filled, more kind, more loving & much better all round.
Her effect is entirely positive.
Be more Lilia!
🚨 Harrison Road planning application REJECTED
I supported local residents in opposing this proposal, as it would have caused increased noise, parking, and a change in the character of the property, which would have negatively affected the area.
Read my letter in full 👇🏿
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My daughter's severe disability DOES NOT prevent her from playing in playparks. The failure to provide sufficient wheelchair accessible play equip DOES prevent her from playing in parks.
In playparks that cater for her play needs she can happily play alongside all other kids.
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Last night we were ice-skating with
@maemurrayfdn
at
@SSEBelfastArena
with
@BelfastGiants
This is a video of Lilia ice-skating in her wheelchair with one of the Belfast Giants pushing her as mummy just couldn't go fast enough for our wee thrill seeker.
#Inclusion
#Participation
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Parents of disabled children shouldn't need to spend their time fighting for their children to have
➡️ a full & meaningful education;
➡️ safe & dignified toileting rights;
➡️ the right to high quality play in public playparks.
These basic things should be there for ALL children.
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I will continue to wear a mask to try my best to protect myself, my CEV child & every CEV, immunosuppressed & older person going about their daily lives and in an effort to lower community transmission in general.
Lots of other ppl were doing the same today too 👍😷
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Super proud mummy this morning.
Grace got 4 As in her AS exams including 100% in maths. Big celebrations tonight for our hardworking girl 🎉🎉
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Whilst non-disabled children enjoy a playpark full of new bespoke play equipment at new Oxford Island Playpark, I've been advised that Lilia can experience "imaginative play" & "free play" where she makes up her own games.
Lilia has profound & multiple learning disability. 1 /2
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Some Councils be all annoyed at me for complaining abt their failure to provide
#ChangingPlaces
toilets like I'm the unreasonable one for not just accepting that my severely disabled daughter is a nobody who deserves to lie on their public toilet floors.
I never ever will.
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I'll never understand how forcing carers to struggle to lift severely disabled children/adults out of wheelchairs onto disgusting public toilet floors for changing is still standard accepted practice for public bodies providing new build publicly funded community projects in 2020
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Eventually got to celebrate Lilia's 16th birthday when she is all recovered from her recent illness and her big sister was back from uni at the weekend.
(This is her third birthday cake btw)
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Proud and happy household today.
My eldest daughter Grace got 3A*s in Maths, Physics & Economics and will be off to Queens to study Maths & Finance 🎉
#NewAdventures
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Photos of the wheelchair accessible picnic benches at the Diversity Park in Portstewart.
Seating is recessed so wheelchair users can sit central. One wheelchair space either side of the table.
Also works well for prams & buggies so really family friendly as well.
#Inclusion
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This is leadership in the full equality, dignity, worth & citizenship of disabled ppl 👇
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Also she has "Opportunities for play/learning in natural spaces"
To be clear, the nature was always there. Wheelchair user children are entitled to equitable play equipment in the new publicly funded playpark, as well as the pre-existing nature that everyone else enjoys.
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I'll tell you why not.
Because I've a severely disabled child &
#HillsboroughForestPark
has no
#ChangingPlaces
toilet.
My child would have to be changed on a disgusting public toilet floor bcs safe & dignified toileting is not available for severely disabled children & adults.
🎥Looking for something to do with the kids? Why not visit Hillsborough Forest Park and check out the new sculpture trail? The 10 sculptures are linked by a digital app. Watch our video for a sneak peek and we hope to see you soon.
@lisburnccc
@nidirect
@WalkNI
@DiscoverNI
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Behind my 'campaigns' is a mum wanting to make sure that my beautiful daughter & other severely disabled kids don't have to lie on public toilet floors & don't face exclusion from playing with other kids in parks.
It's so very personal & that's why it hurts so much when I fail.
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Oh my goodness. That's me being mentioned! I'm so proud.
Thank you so much
@conormurphysf
,
@SueGrayDOF
&
@dptfinance
for this amazingly positive step in delivering on equal, safe & dignified toileting rights for severely disabled people in our communities.
#NoMoreFloors
📹 Finance Minister
@conormurphysf
reaffirms his commitment to implementing
#ChangingPlaces
toilets into local Building Regulations as soon as possible ⬇
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Severely disabled children should not spend their childhoods being changed on public toilet floors & being excluded from play in playparks alongside other children.
These children are entitled to start their lives with the same equality, dignity & services afforded to others.
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Wow- just wow. Thank you all 🙌
Goes to show that ppl like inclusion when they see it & they want it.
The - 'too expensive, too big, too rarely used, too ugly' arguments are just WRONG.
These excuses are a disservice to disabled ppl, carers & society and hold us all back.
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We've arrived at Disneyland Paris and Lilia coped so well with all the travelling. She's a wee superstar ✨️
#FutureJetsetter
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On
#IWD2020
I pay tribute to my severely disabled daughter Lilia & other disabled woman & girls who endure having their basic humanity & existence in society ignored by the denial of the same safe, dignified & hygienic toileting rights afforded to every other female
#NoMoreFloors
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Fully inclusive play - wheelchair accessible roundabout.
#MoMowlamPark
#RespectEveryChildsRightToPlay
#Inclusion
#Equality
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Feeling gutted that my mum's care home has had a covid outbreak. Mum has tested +ve & has been feeling quite unwell.
She's had such a horrible, lonely few months & now this when the vaccine is so close.
I'm hopeful that she will recover but it's a worrying time 🙏
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@RoseUnwin
Happy birthday Joey from Lilia 🎂🎉
Our children's beautiful and joyful spirits & personalities are enough to change the people who have the pleasure of knowing & loving them ❤
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The standard I'm aiming for for my amazing daughter Lilia, is all the long, long way up to equality.
We might not get there, but its what I'm unapologetically aiming for.
#EverybodyEqual
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It's Lilia's 12th birthday today.
Lilia has spent most of her childhood having to be changed on public toilet floors due to the failure to provide her & other disabled ppl with safe, dignified
#ChangingPlaces
toilets. As a young lady her future shouldn't involve toilet floors.
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Earlier this wk we thought we were going to lose our Lilia based on scan results we were given. We were heartbroken in the depths of despair.
Now she's good hope of a full recovery after major surgery.
Lilia's been through so much & for us it's been an emotional rollercoaster.
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Husband & I are away this weekend to celebrate our recent 20th wedding anniversary.
This was scene from our woodland lodge in Enniskillen this morning ❄️
#WinterWonderland
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On
#IDPD2020
I pay tribute to my daughter Lilia who has added so much love, inspiration, gentleness & kindness to our lives.
I love her so much & my hope for her is that she will experience the acceptance, equality & inclusion that she needs to be happy & fulfilled in her life.
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I can't believe what just happened. I'm so incredibly happy & grateful to
@conormurphysf
for taking quick & decisive action to work towards incorporating mandatory
#ChangingPlaces
provision into local Building Regs. Severely disabled ppl will have full & equal toileting rights.
Speaking to
@Chris_McClem
this afternoon, Finance Minister
@conormurphysf
said he's committed to incorporating
#ChangingPlaces
Toilets into local Building Regulations as soon as possible.
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Really pleased to report that my complaint regarding large scale events funded by Causeway Coast & Glens BC not providing
#ChangingPlaces
toilets has received a positive response & a new CP toilet policy for events is now going to be developed.
I'm so happy 😀 👍
#IncLOOsion
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Equality for disabled ppl shouldn't be something that sits in a separate box to be pulled out when there's extra money or when ppl deem its appropriate to grant disabled ppl full inclusion.
Equality should sit at the heart of everything public bodies do.Every project every time.
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Lilia is through surgery and back on the ward. Big relief.
More hurdles & steps ahead but so far so good.
Lilia is in surgery. In the hands of lots of consultants.
Pacing 🙏
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And this is what it's all about.
Two sisters having fun & making wonderful memories together of beautiful summer beach days, surfing & chillin" ⛱️ 🏄♀️ 🌊
Thank you
@maemurrayfdn
&
@CausewayCouncil
for
#Inclusive
Portrush
#SurferSisters
#Inclusion
#EverybodyEqual
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No new building should be called 'state-of-the-art' if carers have to haul severely disabled children & adults out of their wheelchairs to lie down on disgusting public toilet floors within it.
State-of-the-art would provide severely disabled ppl with more than a toilet floor.
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Yes'day we were at the new
#Inclusive
park in Portrush.
After a long play in the park we took Lilia to a cafe for ice-cream where we saw current & past pupils of her Special School & bumped into her current classroom assistant who brought her P7 daughter over to meet Lilia.
1/2
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When we are out and about with Lilia we quite regularly get disgusted looks from passers-by, like they are seeing some awful specimen for the first time.
I'm therefore sadly not so shocked that this is how some ppl think.
Parents offered class photo with no 'complex needs' pupils
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Sometimes ppl say that the low numbers of disabled ppl doesn't justify the cost of making things fully inclusive.
I believe that they should instead focus on the high cost of exclusion, inequality, disadvantage & marginalisation, to individuals & society overall.
#ValueNotCost
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Some of our local Councils believe that it's okay to exclude my 12 year old severely disabled daughter from their new publicly funded £multimillion developments because I can no longer lift her out of her wheelchair to be changed on a public toilet floor.
It's a total disgrace.
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I've some nice news 😊
We were nominated by a family friend for a make-a-wish type trip & in summer we were very surprised to be offered a family trip to Disneyland Paris.
All being well we go on Thursday. Very, very excited (& a little nervous)
The girls will love it ❤️ And
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It is Lilia's 15th birthday 🥳 today so double chocolate 🍫 & treats 🎂 for her.
We're so proud of our little
#changemaker
who brings so much love, pride, giggles and happiness into our lives ❤️
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Councils would do better to listen to disabled children & families abt the play provision they actually want in playparks.
We don't feel excluded by a little bit of fencing around a wheelchair swing. We feel excluded when we have to go elsewhere.
#RespectEveryChildsRightToPlay
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So pleased for my eldest girl who got 8A*s & 2As in her GCSEs.
The last time she saw Granny Flo was the night she finished her school exams. Granny died the following day.
Granny Flo would have been so proud.
#ProudOfOurGirl
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Shopping with Lilia at Foyleside Shopping Centre yes'day.
Housekeeping staff saw us approaching the toilets & came to us saying you'll be needing the
#ChangingPlaces
toilet, directing us & opening the door.
They were so pleased to be able to offer us safe & dignified toileting.
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Services for disabled ppl shouldn't be hard won.
They shouldn't come as the result of explaining, campaigning or complaining. They shouldn't be celebrated as an act of kindness or charity.
Equality & inclusion should just be what we do as standard, everytime.
#EverybodyEqual
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Lilia got a BIG haircut for starting back to school soon.
Hairdresser was brilliant with her and put in some pretty plaits.
#LittleThingsMatter
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Lilia is home from hospital 🎉🎉🎉
Thank you for all the lovely messages.
I did see them all but Lilia has had my phone most of the time for her videos & music 🎶
She still has to recover from her op but we're so pleased at how well she's progressing. She's a wee star 🌟
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My disabled child has a right to safe & dignified toileting bcs she is a human being.
My disabled child has a right to play in public playparks bcs she is a child.
This really is the only information relevant to the provision of
#ChangingPlaces
toilets & fully inclusive play.
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As a family with a severely disabled child, we just want to go where other families go. We want our disabled child to have equal opportunity to play in playparks & for her not to have to lie on a disgusting public toilet floor.
That's not too much to ask, is it?
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Lilia cannot wear a mask. She just takes it off straight away. Anti-maskers don't stand up for her.
They abuse the mask exemption intended for a small percentage of ppl like Lilia & their lack of mask wearing causes further problems for disabled & CEV ppl accessing society.
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We had the absolute pleasure yesterday of being invited as a family to
@TitanicBelfast
to see their new
#ChangingPlaces
toilet & enjoy this premier visitor attraction with premier toileting facilities available for Lilia.
We had the best afternoon.
Thank you
@TitanicBelfast
😊
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Wasn't happy with Lilia's form so took her back into hospital on Monday morning. After a scary few days we've been moved to Antrim Hosp & she is on the emergency surgery list for tomorrow morning.
Praying the op goes ahead, all goes well, she recovers well & no further issues 🙏
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I reckon that this is the clip they should play on BBC Children In Need night to protray the plight and problems faced by disabled children & their families in 'modern' UK.
Cllr Hammersley responds to being told that children with SEND were institutionalised with "they must have had better ways of dealing with them. Let's go back to some of those ways"
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Lilia being awarded her gift card for topping the public vote with the winning name 'Lili-Loo' in her honour, for one of the two new mobile changing units obtained by
@CausewayCouncil
🤩
So proud of her work improving inclusion for all
Thank you everyone ☺️
#NoMoreFloors
☀🚲 Family Fun at Council’s Inclusive Events 🚲☀
A big thank you to everyone who attended Council’s inclusive events held last week.
Held in Portstewart & Limavady participants were able to make use of Council’s new all-ability cycles.
Read more here
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Imagine the impact of a generation of disabled children who've never experienced having to lie down on a public toilet floor, never faced exclusion from playing in the park alongside other kids & who've only ever known full inclusion in adventure, activities & their community 🤗
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In terms of disability rights, I really think that in 2023 we should have moved beyond the stages of 'awareness' & 'acceptance' and we should be in full unquestioned inclusion mode by now.
#EverybodyEqual
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We are a family like any other. Just because we have a severely disabled child doesn't mean that we should live a life of exclusion, inequality & marginalisation.
We are an equal part of our community & society.
#EverybodyEqual
#Inclusion
#Equality
3
25
167
Severely disabled children & adults will never be treated as equals in a building or at a venue where they are expected to lie on a disgusting public toilet floor.
An equal would enjoy the same safe, dignified & hygienic toileting arrangements afforded to others.
#ChangingPlaces
4
29
165
I'm absolutely thrilled with today's announcement for mandatory
#ChangingPlaces
toilet.
I've campaigned for many years for safe & dignified toileting for my beautiful daughter Lilia &other disabled & older ppl. So proud & happy.
Thank you
@conormurphysf
@dptfinance
&
@SueGrayCO
Finance Minister
@conormurphysf
today announced changes to building regulations, which will mean Changing Places toilets must be provided in certain buildings commonly used by the public. Read more:
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At no point when my newborn baby was overcome with uncontrollable epileptic seizures which then progressed into developmentally damaging infantile spasms, was I thinking to myself, wow I've won the golden ticket here cos she'll likely qualify for future school transport.
On home-school transport, if you have an Education, Health and Care Plan for a kid with SEND needs, it's a golden ticket. You can, among other things, get them taxis to/from school. There are obviously many kids who do need this! But the number of such plans has risen hugely.
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Flo's cancer op was moved forward earlier this week& is planned for tomorrow.
After a nervous wait today she was given the go ahead this evening to go into hospital as a bed was available for her.
Fingers crossed all goes well tomorrow. It'll be another anxious wait for us 🙏
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🎉🎉Lilia just got vaccinated 🎉🎉
I took her along to a walk-in clinic with paediatrician's letter confirming that she is CEV & recommending vaccination with pfizer.
She was given the VIP treatment. Hoping that she keeps OK in next few days.
#Vaccinated
#OneRelievedMummy
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Just to clarify that although my daughter Lilia attends a special needs school in NI and has highly complex needs, she doesn't have a "severe propensity to violence"
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Eldest daughter & I were attending
@QUBelfast
Open Day today and I spotted this beauty 😍 in the fabulous new students union building.
#IncLOOsion
#ChangingPlaces
#EverybodyEqual
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Lilia has underlying health conditions. She lives a happy, fun & full life with a family that adores her.
Her life matters and her importance & humanity are not & will not be diminished in any way because of her medical conditions.
#IHaveUnderlyingHealthConditions
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Fully inclusive play - wheelchair swing
#MoMowlamPark
#RespectEveryChildsRightToPlay
#Inclusion
#Equality
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20th wedding anniversary today 💕
We're even getting to go out tonight to celebrate 🍾
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We couldn't be at Stormont today without a visit to the fantastic fully inclusive Mo Mowlam playpark.
Fully inclusive play - flush trampoline
#MoMowlamPark
#RespectEveryChildsRightToPlay
#Inclusion
#Equality
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I'm a civil engineer. Civil engineers provide safe& hygienic sewerage & sanitation infrastructure to safeguard public health.
Yet in 2019 I have to beg for my severely disabled daughter to have safe & hygienic toilet facilities rather than a dirty germ-ridden public toilet floor
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Every leader should embrace disability.
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'Who the hell do they think they are?' isn’t the right question to ask abt 'difficult' SEN parents.
It's -who the hell do they think their children are?
& the answer is: brilliant, full & equal citizens who are entitled to equitable access to public services, respect & dignity.
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I am so shocked at the sheer inappropriateness of this as a wheelchair user designated piece of play equipment 😡😡
"Show me how to... Run, Walk, Hop, Skip"
How is a wheelchair user child supposed to feel playing with this?
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