I'm coming at this from a slightly different angle. In Oz our Disability Discrimination Act also includes chronic illness and so, from that you might think that some supports would follow, and up to a a point they do. Allowances are paid to parents, in my jurisdiction no one can be discriminated against for their caring responsibilities, I think that might now be national.
However, in practice I've found the types of efforts at inclusion in schools are akin to someone having cancer and turning up to hospital and getting the diabetes treatment instead, because that's what the staff have been trained to provide. I live for the day when a parent walks into a school to tell staff their kid will be away due to injury or prolonged illness and the Principal will say. OK, we know what to do to help them.
It's been an endless frustration to me that kid was expected to attend school, and for us to participate in the process as described above. That was more harmful than helpful.
We also had to try to work around going to treatment both locally and interstate and keeping up with learning. Hospital schools exist for kids (but they are at their sickest when admitted) and not a lot of understanding about illness in schools. Outreach nurses do visit the schools, but I think there is a tendency for school to keep things in house and not consult outside their own department. Siloes are causing real harm.
Kinder teacher was taken aback when doing group work with the class about fears, when my kid said they were afraid that they would die. I'd have thought that might have been a given. Perhaps they didn't expect the kid to articulate it so clearly. Psychologists only employed part-time and not really doing much to be helpful from our perspective.
Kid also got many infections whilst at school and spent most holidays in the hospital. The whole thing was a poo fight. As well as impacting badly on the child it was also an awful time for their sibling and really, they were not supported at all, except in their last year of school where one teacher and one of their peers "got it". That's a long time to be invisible in the system and to be relying on over stretched parents to be filling all the gaps.
Much learning support was thrown back onto charities or relying on the goodwill of teachers. The post transplant period x 2 at home was mostly served by us, or the solution was the enrol into the school of distance education (which local school of one similar friends was told meant they couldn't maintain their local enrolment as well), we were phoned and asked to give up our child's place in the local school when the school results were highly rated after standardised testing results were made publicly available. Of course I indicated that I would go to the media were we pressured about this. Oh the fun and games.
From our perspective the whole illness things in schools is treated as an inconvenience to them and not from the perspective of the student and what might be best to engage their learning or ensure their social needs were being met.
Things are changing, but I suspect at snail's pace and nothing changed at al over the 13 years my child was in the education system.
Even from the other side of the world I can recognise a lot of that.
Schools are generally not great at dealing with individual needs that differ markedly from the norm. They're set up, funded, and staff are trained on the assumption that you can teach a class of kids, with some minor adjustments.
When I was teaching I had a couple of kids diagnosed with type 1 diabetes. We were given training on signs to look out for and a quick reference sheet of procedures in the event of a hypo, but the reality was that if in doubt we were going to call a first aider (who supervised the insulin injections). The practicalities and facts, relayed to us by the diabetes nurse, were actually less of an issue than the psychological impact on these kids of being told they had a life of multiple daily injections to look forward to.
Diabetes, though, is relatively common, manageable and generally not life threatening these days. For rarer and more impactful conditions it's almost like there need to be national teams who can go into schools following a diagnosis and brief them on what is going to need to be in, where flexibility is going to be needed, and provide the extra resourcing required. So much gets left to schools and even with the best intentions schools aren't equipped for it (and schools are too often willing to throw kids with "difficult" needs under the bus if it helps one of their other priorities).
For me, a disabled friendly (or autism friendly; I don't identify as disabled) world wouldn't fill every public space with loud music. I was thinking of going to a local beer festival at a preserved railway centre but it would have to be an afternoon session as all the evenings have live music.
I can't do Pride because the events are all *so*loud*, which frustrates me.
Fortunately the Beefeater our extended family regularly has breakfast knows us now and turns the piped music down in the corner where we're seated.
'Live music' is a problem for me too and has made one of our nicest local pub/restaurants inaccessible to me. They amplify it. And despite there being two separate eating spaces there, there's no doors to keep out the 'live music' and give people a choice. It makes conversation impossible and surely must affect people with hearing impairments as well as autistic people.
There's also a coffee shop in Edinburgh I used to use which now says
"We aspire to provide the highest quality offering in a thoughtfully designed space where everyone is welcome. We value inclusivity and community. Our playlist is loud and we are proudly laptop-free
I'm guessing no-one has told them, that no that's not accessible or inclusive for many people.
Not everywhere can or should be quiet - and quiet with no music has its own problems for me as I get excited, passionate and loud about my special interests without realising it and annoy other people - who let me know about that - which is reasonable from their point of view and absolutely crushing and embarrassing and humiliating to me as I really can't help it or spot it till the damage is done and have to go back to masking or leave.
So it's very difficult. I would like more choice and for places where it's possible to give people those choices and would love in an ideal world to have a place or a pub with soundproof booths people could book to have the noise levels they want or need
I haven't really looked at this thread, but it occurred to me today that one of the reasons I don't go to church any more is that Our Place is simply not disabled friendly.
OK, there is level access from the street into the nave of the church, but there are no WCs accessible to anyone who, like me, uses two crutches, or is wheelchair-bound.
The topography doesn't help - there are steps which really could not be circumvented without major (and expensive) building work, but useful handrails in the WCs, and on the steps leading to the Hall, would be a start. Time for me to lobby the PCC, I think!
On another tack, the girls in my local village Co-Op corner shop now automatically carry my bag(s) to the car for me. I've never asked them to do this, but they've noticed that I have two sticks, and only one pair of hands, and offer to do it simply out of the kindness of their hearts. I need hardly say how much I appreciate this simple gesture.
For me, a disabled friendly (or autism friendly; I don't identify as disabled) world wouldn't fill every public space with loud music. I was thinking of going to a local beer festival at a preserved railway centre but it would have to be an afternoon session as all the evenings have live music.
I can't do Pride because the events are all *so*loud*, which frustrates me.
Fortunately the Beefeater our extended family regularly has breakfast knows us now and turns the piped music down in the corner where we're seated.
'Live music' is a problem for me too and has made one of our nicest local pub/restaurants inaccessible to me. They amplify it. And despite there being two separate eating spaces there, there's no doors to keep out the 'live music' and give people a choice. It makes conversation impossible and surely must affect people with hearing impairments as well as autistic people.
There's also a coffee shop in Edinburgh I used to use which now says
"We aspire to provide the highest quality offering in a thoughtfully designed space where everyone is welcome. We value inclusivity and community. Our playlist is loud and we are proudly laptop-free
I'm guessing no-one has told them, that no that's not accessible or inclusive for many people.
Not everywhere can or should be quiet - and quiet with no music has its own problems for me as I get excited, passionate and loud about my special interests without realising it and annoy other people - who let me know about that - which is reasonable from their point of view and absolutely crushing and embarrassing and humiliating to me as I really can't help it or spot it till the damage is done and have to go back to masking or leave.
So it's very difficult. I would like more choice and for places where it's possible to give people those choices and would love in an ideal world to have a place or a pub with soundproof booths people could book to have the noise levels they want or need
It's odd. I can do gigs and when I was younger I did clubs, as long as they were playing music I liked. I play at open mikes. The thing is, they're occasions when I'm there for the music.
The music flooding my inputs when it distracts from what I'm there for - having a chat, a meal, a drink - that's what burns through spoons really quickly.
Had a terrible time trying to order in the food hall in Manchester's Trafford Centre. Trying to make sense of a range of "meal deals" while dealing with an unfamiliar accent with thumping "background" music intended to mask all the conversations going on but actually just resulting in those conversations taking place at a higher volume - is this what NTs calling "vibrant" or a "buzz"?
It's odd. I can do gigs and when I was younger I did clubs, as long as they were playing music I liked. I play at open mikes. The thing is, they're occasions when I'm there for the music.
If I'm home alone, and I'm cleaning the kitchen, or loading the dishwasher or something, I'll play music, and I'll play it quite loud. So long as it's loud enough to dominate my focus, it's great.
Mrs C likes background music at a rather quieter level, that I find toxic. I don't particularly object to her musical tastes, but she plays it loud enough to be intrusive, but quiet enough to be one competing noise source of many. I find that I have to leave and go somewhere else if I have to think.
@Arethosemyfeet I appreciate your comments very much. A friend of mine has been working on a telepresence robot project for kids to remote into their classrooms when absent for extended periods. That seems to have been well received and is now their full time project.
There is a free accredited course for teachers that was funded by the famous Golden Arches charity. For whatever reason and I suspect siloes again, there does appear to be resistance by some schools taking it up. Weirdly it appears schools with no impacted kids appear to be keen to do the training and the schools that had kids who could really have benefitted from staff having the information, were the ones that were not interested. I can't understand it myself, particularly when it was a commitment of one afternoon, once off with free materials supplied.
A work colleague had told me of some friends whose child was extremely unwell and school was unhelpful. Their Paediatrician made a point of go in toing in to get the school up to speed. Obviously that's not the norm and really shouldn't need to happen.
Too much is left up to individuals and not enough systemic visibility or response, very sadly
It is worth considering that them as are in the schools lack expertise and it is worth getting an expert ( such a paediatrician who stepped in) to show them the way.
Interesting that the “ non involved” schools were keener; perhaps rushing in where angels fear to tread….
Luckily I work in a subspecialty which would not be welcome in most schools ( until year 11-12 level and I doubt even then)
What KarlLB and Louise said. I'm not keen on noisy spaces myself and my daughter actually finds them painful. Not just loud music - electronic beeping, and those ghastly complicated coffee machines that sound like an aircraft taking off and seem to make coffee in geological time. The result is that she's excluded from most public spaces. Can't go to Pride or music gigs. Can't go to most cafés and restaurants, although our favourite Thai restaurant gets it and actually turns the speaker off in the part of the restaurant we sit in. She can do gigs as well - she's a member of a local operatic society - but it's easier to cope with the noise if you're part of the music yourself.
I worked with an autistic heavy metal fan, who didn't like loud noises, who I asked about this. In her case, it's the noise she is expecting that's fine, and agrees with me that with musicians with autism it's almost certainly the combination of expecting the content and volume and having some degree of control over it as well. She loves listening to Sabaton's* music, but avoids them live as they blow things up on stage and the pyros freak her out.
*Swedish metal band who are obviously military history geeks, KarlLB will confirm this (amongst others)
A disabled-friendly world? It would be one which didn't require disabled people to minimise their disabilities all the time. Mind you, in my case, it would help if my head were a disability-friendly space. When the ASD and ADHD are at war, it's decidedly unfriendly.
The other thing to acknowledge is that people's needs are not compatible. For example, sudden noises send my anxiety and/or ASD off the scale, not to mention my emotional dysregulation. This makes sharing space with people who have noisy ticks very difficult.
Trying not to derail the thread too much, but wanted to reply to @Sojourner. The Golden arches research and education module came out of Oncologists having conversations with Education but realised that they didn't "get it" or had other student groups who were more clearly identified as being at massive risk of school failure whereas sick kids weren't even rating and there is hospital school, right? No one was looking at sick kids as a group or keeping the numbers.
Doctors therefore were part of the move to create the teacher education program. Realistically they were flat out treating patients and they didn't have a lot of capacity to do the hand holding in schools that is required. I know from our patient committee that parents suggested that the Psychologist should be doing some outreach work in terms of education with schools, but that position is only part-time and it was deemed unnecessary by Management. Unfortunately, I think they were wrong, but I think that about a lot of things. To my mind having a part-time psychologist for a 25 bed inpatient ward and numerous outpatients is insufficient, but hey!
I would like to think that the schools that took up the course were actually looking at it from an inclusion perspective and recognised that no one had the appropriate expertise. I suspect that within the uptaking schools there were either teachers who had an ill child and recognised the need, or had been those kids themselves in the past and became drivers of change. There was one in my kid's primary school and they were very supportive of the opportunity, others not so much. So much for lifelong learning!!
It could also be that school management due to financial constraints for staff training, were anxious to take up anything that was accredited particularly when offered at no cost. For me the big question is why wouldn't you take up a short free course that provided staff upskilling?
From community attitudes here I think it's because taking up stuff provided through the charitable arm of Golden Arches is viewed as selling your soul to the devil. There seems to be no recognition or concern that they pick up stuff that the government is not doing. Government of course is perfectly happy for someone else to spend the money and do the work, they are off the hook. Except now they are not, people are taking notice and people like my friend are doing the work and giving them the challenge backed up with numbers they've collected to ensure they can't wiggle out of it. Change is coming.
I've just come back from EasterCon at the Telford International Centre, which seems to have done quite well on catering for a range of disabilities. The passenger lift was reserved for mobility scooters and those who had trouble with stairs, though one lady with a larger than usual mobility scooter was using the goods lift - she said that the staff were very helpful there.
There was also a Quiet Room, and a Silent Room, for anyone who wanted to get away from the hustle and bustle for a while.
For some reason, the building had been designed with a slope between two levels of the upper floor, and one chap with a manual wheelchair needed help to go up it.
The building also has high ceilings and good ventilation, which helped with Covid mitigation - attendees were asked to mask but only about half of them did, meaning that some vulnerable attendees were reluctant to go to panels in the smaller rooms.
Some of the Glasgow WorldCon committee were there - that's happening in August - and I think they will be taking note of what worked and what didn't for their event.
Really glad to read of the various options at your Convention @Eigon. Were there also considerations or options for sight or hearing impaired folk? It's a shame that improved air quality was not available, but I imagine that would prove expensive and also require some expertise to set-up and monitor. I am imagining that it was a volunteer run event? It would be interesting to know what the WorldCon people thought, will they be providing feedback?
I'm considering going to Eastercon next year myself, possibly with my daughter if I can talk her into it. It's encouraging to hear that the organisers have made provision for people with additional needs.
Jane R - Bear in mind that there is a different committee every year for EasterCon - but next year's committee will be led by James Bacon, who was the Chair of Dublin WorldCon, as the Con will be in Belfast. Dublin WorldCon worked very hard to be accessible.
They made a presentation at the EasterCon business meeting, and they are very keen to be accessible next year too. EasterCon had the use of several mobility scooters which had been provided by Dublin WorldCon, and I presume they'll be used next year, too.
All the EasterCons are volunteer run.
As far as air quality goes, there was a generous donation of CO2 monitors, which were in all the smaller rooms, and I've been following the discussion on Discord for the Con and only one person has reported a possible positive test for covid - which is quite different from last year, when people were reporting covid during the Con itself (and following the panels from their rooms virtually). Most of the panels are available for catch up virtually, and some people were attending virtually. In fact, one of the guest speakers was in Washington, and another was in Amsterdam. There was an Indian guest speaker too - I'm not sure where he was speaking from, but it may have been India.
For hearing impairment, there were seats set aside in each room for a hearing loop.
I'm not sure what was done for blind or partially sighted people, but I did see a couple of blind people at the Con.
Comments
Even from the other side of the world I can recognise a lot of that.
Schools are generally not great at dealing with individual needs that differ markedly from the norm. They're set up, funded, and staff are trained on the assumption that you can teach a class of kids, with some minor adjustments.
When I was teaching I had a couple of kids diagnosed with type 1 diabetes. We were given training on signs to look out for and a quick reference sheet of procedures in the event of a hypo, but the reality was that if in doubt we were going to call a first aider (who supervised the insulin injections). The practicalities and facts, relayed to us by the diabetes nurse, were actually less of an issue than the psychological impact on these kids of being told they had a life of multiple daily injections to look forward to.
Diabetes, though, is relatively common, manageable and generally not life threatening these days. For rarer and more impactful conditions it's almost like there need to be national teams who can go into schools following a diagnosis and brief them on what is going to need to be in, where flexibility is going to be needed, and provide the extra resourcing required. So much gets left to schools and even with the best intentions schools aren't equipped for it (and schools are too often willing to throw kids with "difficult" needs under the bus if it helps one of their other priorities).
'Live music' is a problem for me too and has made one of our nicest local pub/restaurants inaccessible to me. They amplify it. And despite there being two separate eating spaces there, there's no doors to keep out the 'live music' and give people a choice. It makes conversation impossible and surely must affect people with hearing impairments as well as autistic people.
There's also a coffee shop in Edinburgh I used to use which now says
I'm guessing no-one has told them, that no that's not accessible or inclusive for many people.
Not everywhere can or should be quiet - and quiet with no music has its own problems for me as I get excited, passionate and loud about my special interests without realising it and annoy other people - who let me know about that - which is reasonable from their point of view and absolutely crushing and embarrassing and humiliating to me as I really can't help it or spot it till the damage is done and have to go back to masking or leave.
So it's very difficult. I would like more choice and for places where it's possible to give people those choices and would love in an ideal world to have a place or a pub with soundproof booths people could book to have the noise levels they want or need
OK, there is level access from the street into the nave of the church, but there are no WCs accessible to anyone who, like me, uses two crutches, or is wheelchair-bound.
The topography doesn't help - there are steps which really could not be circumvented without major (and expensive) building work, but useful handrails in the WCs, and on the steps leading to the Hall, would be a start. Time for me to lobby the PCC, I think!
On another tack, the girls in my local village Co-Op corner shop now automatically carry my bag(s) to the car for me. I've never asked them to do this, but they've noticed that I have two sticks, and only one pair of hands, and offer to do it simply out of the kindness of their hearts. I need hardly say how much I appreciate this simple gesture.
It's odd. I can do gigs and when I was younger I did clubs, as long as they were playing music I liked. I play at open mikes. The thing is, they're occasions when I'm there for the music.
The music flooding my inputs when it distracts from what I'm there for - having a chat, a meal, a drink - that's what burns through spoons really quickly.
Had a terrible time trying to order in the food hall in Manchester's Trafford Centre. Trying to make sense of a range of "meal deals" while dealing with an unfamiliar accent with thumping "background" music intended to mask all the conversations going on but actually just resulting in those conversations taking place at a higher volume - is this what NTs calling "vibrant" or a "buzz"?
If I'm home alone, and I'm cleaning the kitchen, or loading the dishwasher or something, I'll play music, and I'll play it quite loud. So long as it's loud enough to dominate my focus, it's great.
Mrs C likes background music at a rather quieter level, that I find toxic. I don't particularly object to her musical tastes, but she plays it loud enough to be intrusive, but quiet enough to be one competing noise source of many. I find that I have to leave and go somewhere else if I have to think.
There is a free accredited course for teachers that was funded by the famous Golden Arches charity. For whatever reason and I suspect siloes again, there does appear to be resistance by some schools taking it up. Weirdly it appears schools with no impacted kids appear to be keen to do the training and the schools that had kids who could really have benefitted from staff having the information, were the ones that were not interested. I can't understand it myself, particularly when it was a commitment of one afternoon, once off with free materials supplied.
A work colleague had told me of some friends whose child was extremely unwell and school was unhelpful. Their Paediatrician made a point of go in toing in to get the school up to speed. Obviously that's not the norm and really shouldn't need to happen.
Too much is left up to individuals and not enough systemic visibility or response, very sadly
Interesting that the “ non involved” schools were keener; perhaps rushing in where angels fear to tread….
Luckily I work in a subspecialty which would not be welcome in most schools ( until year 11-12 level and I doubt even then)
*Swedish metal band who are obviously military history geeks, KarlLB will confirm this (amongst others)
The other thing to acknowledge is that people's needs are not compatible. For example, sudden noises send my anxiety and/or ASD off the scale, not to mention my emotional dysregulation. This makes sharing space with people who have noisy ticks very difficult.
Doctors therefore were part of the move to create the teacher education program. Realistically they were flat out treating patients and they didn't have a lot of capacity to do the hand holding in schools that is required. I know from our patient committee that parents suggested that the Psychologist should be doing some outreach work in terms of education with schools, but that position is only part-time and it was deemed unnecessary by Management. Unfortunately, I think they were wrong, but I think that about a lot of things. To my mind having a part-time psychologist for a 25 bed inpatient ward and numerous outpatients is insufficient, but hey!
I would like to think that the schools that took up the course were actually looking at it from an inclusion perspective and recognised that no one had the appropriate expertise. I suspect that within the uptaking schools there were either teachers who had an ill child and recognised the need, or had been those kids themselves in the past and became drivers of change. There was one in my kid's primary school and they were very supportive of the opportunity, others not so much. So much for lifelong learning!!
It could also be that school management due to financial constraints for staff training, were anxious to take up anything that was accredited particularly when offered at no cost. For me the big question is why wouldn't you take up a short free course that provided staff upskilling?
From community attitudes here I think it's because taking up stuff provided through the charitable arm of Golden Arches is viewed as selling your soul to the devil. There seems to be no recognition or concern that they pick up stuff that the government is not doing. Government of course is perfectly happy for someone else to spend the money and do the work, they are off the hook. Except now they are not, people are taking notice and people like my friend are doing the work and giving them the challenge backed up with numbers they've collected to ensure they can't wiggle out of it. Change is coming.
There was also a Quiet Room, and a Silent Room, for anyone who wanted to get away from the hustle and bustle for a while.
For some reason, the building had been designed with a slope between two levels of the upper floor, and one chap with a manual wheelchair needed help to go up it.
The building also has high ceilings and good ventilation, which helped with Covid mitigation - attendees were asked to mask but only about half of them did, meaning that some vulnerable attendees were reluctant to go to panels in the smaller rooms.
Some of the Glasgow WorldCon committee were there - that's happening in August - and I think they will be taking note of what worked and what didn't for their event.
They made a presentation at the EasterCon business meeting, and they are very keen to be accessible next year too. EasterCon had the use of several mobility scooters which had been provided by Dublin WorldCon, and I presume they'll be used next year, too.
All the EasterCons are volunteer run.
As far as air quality goes, there was a generous donation of CO2 monitors, which were in all the smaller rooms, and I've been following the discussion on Discord for the Con and only one person has reported a possible positive test for covid - which is quite different from last year, when people were reporting covid during the Con itself (and following the panels from their rooms virtually). Most of the panels are available for catch up virtually, and some people were attending virtually. In fact, one of the guest speakers was in Washington, and another was in Amsterdam. There was an Indian guest speaker too - I'm not sure where he was speaking from, but it may have been India.
For hearing impairment, there were seats set aside in each room for a hearing loop.
I'm not sure what was done for blind or partially sighted people, but I did see a couple of blind people at the Con.