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Social Democrats co-leader Róisín Shortall TD today called on the Minister for Health to intervene to compel the HSE to release smear slides to women affected by the CervicalCheck controversy so they can be independently reviewed.
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“We know our children’s needs, so by including us in your planning, we will help you to make your programme inclusive in ways you’d never even have considered.”
The theme of this year’s Late Late Toy Show was inclusiveness. As with every year, a number of charities nominated children to experience the magic of the set for themselves in advance of the show.
My three-year-old daughter, Ava, was one of these lucky children.
Ava has a rare genetic condition called Wolf-Hirschhorn syndrome. This means she doesn’t talk, doesn’t sit independently, let alone walk, has impaired vision and hearing and an intellectual disability, which means she has a developmental age of approximately six months.
A genetic disorder that affects many parts of the body, the major features of Wolf-Hirschhorn syndrome include delayed growth and development, intellectual disability, low muscle tone and seizures. It is caused by a missing piece of genetic material near the end of the short (p) arm of chromosome 4.
The day before the show was recorded, about 15 invited children and their families spent 45 minutes on the set playing with the array of toys donated for the show.
The children were aged from six months up to pre-schoolers, and their abilities were varied.
Some were able to run around, others like Ava needed complete support, some bum-shuffled and crawled, and others needed equipment like oxygen and feeding systems for tube feeding. Children with varying degrees of intellectual disabilities were also present. It was wonderful as a parent to see the excited faces of families eagerly awaiting to experience the magic that is the Late Late Toy Show.
We were invited into studio and encouraged to enter the ‘big top’ ring that had a scattering of toys.
Ava’s needs are quite particular, with her vision and hearing impairments and her intellectual disability. It’s sometimes tricky to pick suitable toys, but I scanned the room for light-up toys that would ordinarily be a winner and proceeded to encourage play by placing my hands over hers and guiding them, just like at home.
The studio set-up and the amount of people in such a small area was overwhelming and she became agitated. I tried to find a quieter spot to give her time to adjust but there just didn’t seem to be any without leaving the filming area and studio.
We settled into a section of the ring away from the others and I pulled some cuddly toys over for Ava to stroke and maybe give her a soothing sensory feedback she craves. She grabbed the toy and shut down. For those who haven’t witnessed a shutdown, it’s watching a person kind of switch off, a defensive mechanism when everything becomes too much.
When the show was broadcast on Friday night, a pre-recorded segment featuring our children was played to the nation.
Like many watching, our house was filled with delight as the segment progressed, especially seeing children with disabilities giving reviews of the toys.
Visibility of children with disabilities is a crucial first step towards inclusion in our society. More and more we are seeing people with disabilities in the workplace, in public events, in the media, and on working groups within State bodies.
But visibility is not and cannot ever be mistaken for inclusion. Inclusion is a much more proactive and engaged process.
So what exactly does it mean to be ‘inclusive’ and what does it take?
On a household level, it means our home revolves around our children, Ava and her two older brothers, both of whom have autism.
Inclusiveness at home means having a mental checklist to make sure that days out include visiting places where wheelchair access is guaranteed; that the times of outings are orchestrated to avoid periods of peak usage so we can find quiet space when necessary; and that activities are suitable for our children’s abilities and sensibilities.
It also means that those who may assist our children are not only aware of their additional needs and requirements, but also that they accept that these needs and requirements can’t be put away or hung up like a coat; that they are inherently part of who our children are, how they act and why they do the things they do sometimes.
As parents living with children with disabilities on a daily basis, practising this kind of active inclusivity has become second nature. But this sensibility hasn’t quite transferred to wider society yet – and to say this is not to reproach others, but simply to acknowledge it as a fact.
It’s easy for people living in an able-bodied world to forget that people who live with disabilities need extra thought when organising events, or setting up support systems, services, transportation, or even fun.
Our experience of the Late Late Toy Show is case in point. While it was wonderful to take part in this special event, it was apparent in so many subtle ways that the extra needs of our children simply did not occur to organisers.
Children with sensory issues could easily have been better accommodated by the simple act of dimming the stage lights to an ambient room level to begin with, before slowly raising them to functioning levels.
While many of the toys on the show were amazing and fun for able-bodied children, they posed particular issues for children with disabilities due to mobility, developmental or sensory issues.
Mixing in a few sensory and special needs toys would have made their experiences so much more enjoyable.
The wonderful thing about starting with the little things like lighting, sound, smell, visual stimulation is that these can lead to bigger things.
Because the realisation also needs to grow that people with disabilities need to be able to take much bigger things for granted as well when it comes to inclusion. Things like disability-friendly access to all buildings, including restaurants and bars, and sensory friendly times at supermarkets.
Sensory friendly events need to be a routine occurrence; sensory issues don’t randomly appear and disappear.
So, to Tubs and the Late Late Toy Show elves, let me make an early Santa request for next year.
Please have us back to be part of this special occasion – but consider asking us parents for our input ahead of the big day.
We know our children’s needs, so by including us in your planning, we will help you to make your programme inclusive in ways you’d never even have considered.
– Samantha Kenny is a mother of four and a family carer for three of her children who have disabilities. She is the Social Democrats’ candidate for the Athy area in Kildare County Council. This opinion piece originally ran in The Irish Times.