I'm sure over the past year or so you have heard a lot about hidden or invisible disabilities. Perhaps as part of a newspaper article about a supermarket adding stickers to their toilet doors, reminding people about hidden disabilities, or maybe you've heard people saying they park in a disabled bay because they have a hidden disability? I think it is great that these type of disabilities are being talked about and people are starting to understand that not every disability is visible.
But I do have an issue with the fact that the more these hidden disabilities are being catered for, the less people with visible disabilities are being considered. My son for instance has a very visible disability, his wheelchair can't really be missed, yet he and his friends seem to have become invisible in our area.
William, aged 8, has quadriplegic cerebral palsy, epilepsy & visual impairment.
Why is that happening? Could it be because:
- The complex disabilities or medical conditions they have are too difficult and complex to cater for?
- There are insurance concerns?
- Their warrior mums are not shouting from the rooftops to remind people these children exist?
- Do their wheelchairs have superpowers that mean only their parents can see them?
- The conditions they are diagnosed with aren't the 'on-trend' ones the media like to talk about?
I'm going to say it, and it might not make me popular, but it needs to be said (especially to the media)...
NEWSFLASH : autism is not the only disability that affects children.
And yet autism seems to be the only condition being considered, by many businesses and services, not just locally but throughout the UK. Is it because it's easy and cheap to provide for this condition and there's almost a guarantee of great press coverage? Or am I just being cynical?
Right now cities, such as Liverpool, are working hard to become 'autism friendly', but why are they not ensuring they are 'ALL disabilities friendly'?
Cinemas are hosting 'autism friendly' screenings but only providing one or two wheelchair spaces and aren't ensuring that surrounding seats are left available for friends, family or carers visiting with the wheelchair user.
Airports are putting a lot of work into their hidden disabilities programme, some are even employing autism ambassadors, but have made few advances or improvements to the services they offer to passengers with visible disabilities.
Shannon Airport recently shared a video of a sensory room they have opened for passengers "with autism and other special needs", their wording alone prioritises one disability over all others. But a quick look at the video shows that they've forgotten about anyone who might need hoisting in order to be able to get out of their chair to enjoy the space (and let's not mention the fact they don't have a Changing Places toilet or an Eagle Hoist at the airport yet shall we?) But, despite this they have received amazing press coverage, which they would completely deserve had they considered everyone with a disability in the first place!
It seems that, these days if a venue, activity or event ticks the autism box then it can be classed as "accessible" and suitable for disabled children and we should be grateful for it, even if it isn't actually accessible in the true sense of the word and even if our children aren't autistic and won't benefit from it.
I had an inkling that writing this blog might get me in some hot water with the parents of autistic children, as it may sound like I am 'picking on' autism, so before I started writing I asked people in various special needs groups for their opinions and I was shocked that most of them agreed with me, even the parents of autistic children.
If I am 'picking' on autism then it's simply because that is the condition that has been 'picked' to be focused on by others and why, when we are constantly fighting for inclusion and equality, are we expected to sit back and be quiet when one disability is being catered for and dare I say it, favoured, over others?
I should make it clear at this point that I am not bashing families of autistic children at all, I think it is great that they are being provided for and so they should be, but at the expense of everyone else?
I'm not happy about that situation because that is not the inclusion we are all striving for and it is actually causing more harm than good. When people are happy to concentrate on being 'autism friendly' they are causing a divide within the community of special needs families, and really we should be working together to create true equality.
I am often contacted by families whose children have experienced some form of discrimination or exclusion, I have shared their stories on my social channels, called on the others to help fight their battles and highlight the issue. But it is rare I see that being reciprocated to support the most vulnerable families, and there is a definite case of "I'm alright Jack" when it comes to disability events, which are suitable for some but not for all.
There are so many specific examples I could throw in here, almost every day there is another event or venue advertised on Facebook as being 'autism friendly'. But in a world where we are striving for inclusion and equality it really doesn't sit well with me that we are expected to sit quietly back while every other disability is being ignored.
Such an event near me was recently exposed as not even being wheelchair accessible, and despite advertising it as a disability event, the owners felt that wheelchair users being able to stay downstairs and watch the other children having fun while getting waitress service, was enough to be 'disabled friendly'. They hadn't considered that the children they were supposed to be providing a service for would be segregated from their friends, and the possibility of a parent being in a wheelchair hadn't even crossed their mind!
Children have been turned away from venues hosting special needs events because they didn't have the 'right' disability. Classmates have been unable to go to the same, tax funded, events because only the most physically able have been catered for. Families are being left isolated because the events where they should be able meet other like minded families, don't have the facilities their children need to be able to attend.
At another autism specific event, a girl was left in waiting for an hour while her able-bodied friends were taken onto the beach to explore, she had autism but also used a wheelchair which the organisers had failed to cater for. They could easily have made some adjustments so that all the children were together and the 'beach' was brought to them so they could explore together, but instead they chose to segregate them. Something that we are all too familiar with now.
So even 'autism friendly' events aren't always 'autism friendly', because autism, like disability as a whole, is on a wide ranging spectrum and affects people in different ways and means they require different things to be able to participate.
You may be thinking that the reasons we have this issue is because there are far more children with hidden disabilities than there are with physical disabilities, or that it is impossible to cater for every single disability and we should be grateful that at least people are trying. But there are far more children without disabilities and we would never accept these excuses if they were used when discussing mainstream provision would we? And we would certainly never be grateful that at least they are trying to include children at all!
It is not easy to cater for all disabilities individually, I agree, however what if we start to cater for the most physically disabled instead of the least? If we are doing that then by default we will be including everyone won't we?
What are your thoughts on this? Have you had similar experiences in your area? Or are you the parent of an autistic child and think we are nuts? I'd love to hear all your opinions!
This post was originally published on the Mum on a mission site
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