h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

At the risk of sounding heartless, I want to relate an incident and then see what the rest of you think about it.

Last night I went to a concert at a WC park. (It was at the little amphitheatre you saw, Baggers. The one that prompted the discussion of whether it was misnamed or not.) The performance, which would have otherwise been enjoyable, was ruined for me and most of the others in the audience by the presence of an austic child who made noises varying from a soft moaning to very loud shrieks for a solid hour. I think he was trying to sing along with the music.

I know that the child's sister was a member of a dance troup that also performed because the same dancers have been at the library and this child was also present and disruptive. At the library performance they showed up a full hour early, besides.

I understand that the mother wanted to see her daughter dance. I also understand that she wants her son to have as normal a life as possible. I would want the same thing in her shoes. I tried to be understanding and helpful when they were at the library, and I tried not to be annoyed last night. But, I'm ashamed to say, I was annoyed. And so were some of the other people. A few actually left because of it.

The question is, why does the mother's right to attend events open to the public with her disabled child trump the rights of the other people there to be able to enjoy a performance without that sort of distraction? If the child hadn't been autistic and was just misbehaving, I'd have thrown them out of the library. Likewise, I'm sure someone would have complained last night if a non-disabled child had created an equal amount of noise. But we all just sat and stewed. At the library, I was afraid to say anything in case the family is looking for a reason to invoke the ADA (Americans with Disabilities Act)and sue someone.

There were around 200 people in attendance last night. Why was the rights of one child more important than our rights? Why didn't the singers, dancers and musicians have a right to perform without a screaming child joining in?

This is a specific instance, but it goes to the heart of a modern problem. We spend a huge amount of money accomodating disabled children in our schools.(And disabled people in general.) This sounds like a good idea. A fair and equitable decision. And it would be if there was plenty of money to go around and it was just a question of doing it. But there isn't. All that special equipment, retrofitting buildings to meet ADA compliance standards, specially trained teachers, etc. takes funds that would otherwise be used for programs that would benefit the other 99% of the children enrolled. How many band programs or science labs or whatever have to be canceled in order to find the money to accomodate one disabled child? And why is that better than not providing for the disabled child?

I don't think there is a win/win solution. Someone is going to get the short end of the stick. It's prety frustrating.

Awk. I'm getting old. Last night I just wanted that kid to shut the up and let the rest of us enjoy the program.

Just use gaffer tape.........................

In the days of my youth, our church had a special room at the rear. As close to sound proofed as early 60's technology could manage. There was where a parent would take a child that had a need to express themselves. Usually infants, because ADD and ADHD were not yet coined terms, and so drugless children did what family and communities expected. The service was 'piped' in to the parent, and no one lost any benefit of the service.

In my simple opinion, the needs and comforts of the bulk of the community outweigh the 'wants' of a single parent or child. Indeed, when providing education and health necessities, provide what-ever separate and special needs as best can be afforded. But NOT to the detriment of the many. As uncomfortable as the situation would have been, the mother and that child of the park concert should have been escorted to the rear of the viewing area. Sadly, her enjoyment of her daughter's performance would have been diminished somewhat (though not eliminated), and the other 99.5% of the audience would have had a much better time.

On the issue of 'what can best be afforded', and such like, there always seems to be this misconception that there is a limited* amoutn of money for Healthcare, education, whatever, which of course there isn't...
certainly in the UK, each time X billion pounds is required to send troops out to the whatever far-flung dessart we're ment to be wildly entheusiastic about killing people with differnt coloured skin in, then that money is found immediately, without any problem. Only when it comes to healthcare, or education, is it apparently then a problem to find whatever sum of money it might be... funny old world when we think its more important to fund killing people than it is to save lives and improve lives of those living amongst us in our own communities.

There is money for everything except what really matters, and it is now they keep us 'cowed' and begging, frightening people with threats of no money. I am not going to get on the topic of expenses as I will blow my top, but the purse strings are in the hands of morons.

The original subject of an autistic child causing a disturbance is a very difficult one. I have friends with autistic children and I know how unpredictable they can be, and how difficult it is for the families to have a normal life.

Websailor

I'd have agreed with you once, Hyp. But then I lived a life like that kid's parents, and among other people even more like that kid and his parents, and I learned how important it is to feel that you belong to a caring community when you're in that situation.

I confess that back in those days I tore people apart when they ever-so-politely asked us to leave. It happened infrequently, because we were rarely confronted that way, but it happened more than once.

To be right about this, there were times when one of us took Alex out into the cinema foyer when he was shouting. The other parent then stayed with the girls, who wanted to see the film, and who needed more than anyone to feel normal. It's a tricky balance, believe me. We shouldn't be too judgemental when people put their own kin first.

I can also remember one time when a woman asked us to leave a recital because we were making too much noise. Any thoughts of actually doing so that I'd entertained till then promptly vanished, and I politely refused. The woman then crossed a major line for me, by saying that Alex was frightening other children. So I humiliated her, coolly and systematically. I dealt her some of the pain my family felt, and that so many other families feel. I tried to make sure that she never again dared to repeat her contemptible presumption.

Do I still feel as angry about it all as that?
I don't know. Time passes.

It's brave of you to post this, but I think you're wrong. Try imagine what it's like from the other side. Try to appreciate how much those brief hours of normality, even if it's pretended normality, mean to special needs families. Then you'll discover something I feel privileged to have learned, that you can share their happiness in such simple pleasures, and that you can amplify that happiness by welcoming them.

Yes back to the example....
were I in the same circumstance I'd feel pretty peed off... about it... but certainly wouldn't dream of saying anything or suggesting that as in this example a child with autism should be excluded from the performance....
An example that immediately springs to mind is idiots in the pictures or on the train or... library ... wherever, with their mobile phones... That seems to be allowed to pass all too easily without comment...
so in a circumstance when there is a great degree of 'justifications' (that isn't the right word I'm looking for but is fairly* close), for a child/adult doing as described in the first post here... I think there is some justification to say its not overly difficult for others to ignore it as best they can
It might not be the same* experiance and 'benifit' and 'pleasure' that the autistic, disabled child is getting from the performance/show/picture as would a non-disabled child, but then if you follow that arguement through; I, as a single middle aged bloke, oughta not have the disturbance of children full stop at the pictures, at the theature or at a concert etc; they can't surely get the same experiance from the performance/show/film as I would...

I had an experience at the cinema once that was unforgettable. It didn't involve any one with special needs, just some unruly kids and crying babies.

The film was South Park: Bigger, Longer and Uncut. Definitely NOT a family film. Just before the film got started this couple comes in with 5 children around 5-10 years old and two babies. They sit on the front row as that was the only seats available for that many together. This was opening night for the film. The children spent much of the film playing musical seats, jumping around and annoying everyone but the extra special annoyance came from the babies. One started wailing and the parents did nothing for at least 5 minutes when finally the mother heads for the exit... She never actually exited though! She just walked over to the side of the theatre near the exit. What was the point of that. Then just as the first baby starts to quiet down the other one starts up and she trades one for the other and returns to the side of the theatre. We had to put up with crying babies for at least 15 minutes of the film.
About an hour and a half into the film these people get offended by the content and get up to leave. When they do the audience gave them a loud round of applause as they left.

There is no easy answer to this one Hyp, perhaps no acceptable answer at all. As with so many other situations it's about drawing lines. Where are they drawn and who gets to do it? Everybody involved wants the line drawn in a different place. Should people in wheelchairs be allowed on the buses in the middle of the rush hour when the bus is packed and people are trying to get to work on time using a bus that only runs once every 40 minutes and just barely gets them to work before they're late and docked a day's bonus, and it takes five minutes to get a wheelchair on the bus and strapped down? If I missed a connection and was an hour late for that reason I'd be pissed off. There are justifiable reasons for both sides of that one.

Disabled people were once hidden away, housebound, confined and unable to do many of things that the rest of us take for granted. If you were once able-bodied and been disabled because of some kind of accident, you're probably going to want to get back out there and do as many of the things that you used to do. You might not take kindly to being stuck away with nothing to do all day and nowhere to go. But how far do you go before you metaphorically start treading on other people's toes? How much do you (one person) feel you have a right to inconvenience a lot of people going about their daily business? If you're a Trekkie you might go with Mr Spock - the needs of the many outweigh the needs of the few... or the one. But what if you're the one? I don't think most of us would accept it if that was us.

If we're going to be a compassionate and understanding society we often have to make allowances for others, but others also have to understand that they are lines which, if they cross, are going to inconvenience, or possibly upset, a lot of people. Is one person's want more important than another's need, or vice versa? It's a question with no good answer that's going to satisfy everyone.

Speaking of the ADA...

http://failblog.org/2009/08/02/braille-faille/

I guess my take on this is a little different, having been the parent of a child with fairly severe ADHD. Without medication, D cannot sit still, and cannot focus for that long. But she loves music. I used to take her to summer concerts much like the one you're describing, Hyp, and no one ever even looked at me funny. Why? Because I would always sit towards the edge, and if she got squirmy, she could run around behind me. In movies, I would always sit by the door, just in case -- and we always went to matinees, just in case we had to leave (and because there are more parents with kids at matinees, they're a little more tolerant of squirmy kids!).

Now, I'm not saying that this parent could or should allow their child to roam free, but really, she can't sit a little further away from everyone, knowing that her child likes to 'sing'? It's not like the music doesn't carry. But maybe she's so used to it that she doesn't realize how it affects other people (and of course, no one is going to say anything, because they're worried about how it will be taken).

But my thing is, disruptive children are disruptive children, regardless of their abilities. Maybe in the park you don't say anything, but in YOUR library? Your patrons have the right to enjoy the library. Now, I'm not saying that they have a right to perfect silence, or to demand that children be banned. But you have the right to approach this woman in the library, and ask that she work with you to find a solution to her child's disruptive behavior. You say she came an hour before an event. Say something such as 'I noticed that you came early to the presentation last month, and it seems that your son gets a bit uncomfortable with the silence in the library. We have a great grassy area on the X side of the library...maybe he could burn off some of that energy there before the presentation next time.' Let her know that you're aware of the problem without making her feel like her parenting sucks.

I know what we need...

Child sized sound proof hamster balls.

Gosho- the example of the transport on the bus is a good one, not least as there are such simple and well working solutions to that exact problem; some of the buses here now are so much easier for wheelchair access; same with some of teh taxi cabs, err can't remember waht the cabs were called, but there an updated version of teh old black london cabs, and it relaly doesn't take more than half a minute longer to get a wheelchair sucessfully into one than it does to get a person with a couple of cases into it
Mind, they've still not found a good solution to easily get a wheelchair onto a train (as far as I've noticed anyhow on the trains I use), Though again in five minutes I can think of half a dozen easy, effective solutions to getting a wheelchair on a train; sadly each would require some level of forethought on the part of those who design... more specificlaly on those who comission* new train carages.... The inability of the Thatcher government to think about anything else cept the next election means of course now that we've entirely crippled our train network for perpetuity by forcing it to be run not for the passengers, but for the shareholders... oh well... I digress...
err...
anyhow, the point was... I think... any such technilogical solutions are extremely cheap overall; when compaired to the amoutn of freedom and equality they provide for a large number of people.
situeation one, inaccessible taxis, inaccessible buses, inaccessible trains.
Person in a wheelchair wants to go to their rail station... I'm guessing they've a nice accessible house/bungalow that doesn't seem to difficult to manage
They'd require a 'special' car/van to get them to the rail station, and one or more people to help them on to the train....
with accessible taxi, bus and rail, they can do all of that with very limited assistance from others...
One of the most amazing people I ever met was a wheelchair using, partially sighted, near-deaf lady, who worked full time and was constantly travelling round the whole country doing this work, including lots of presentations, talks and workshops she ran and designed herself... I'd pity the person who was rude to her as she travelled about in a mixture of public and private transport...

Hey Hypatia...how you doing? I miss your posts.

It seems like a simple case of lack of manners, common sense and consideration for others.

When you rub elbows continually with the public, scarcely a day goes by that you are not reminded that exactly 50% have IQs below 100.

Another thing I was reminded of, after my last post, was the trains I used a couple years back from Waterloo.... They were new* shiney trains, new shiney carages.
Obviously in the design process they decided to not account for anyone with a chest larger than 48 or who was more than 5 ft 8 ins tall... You certainly couldn't get a wheelchair into the isle, you certainly couldn't get a pram or a push chair into the isle, I had to walk slightly sideways as my shoulders were too wide. and where the lights were I just* brushed the ceiling/ceiling lights An example where if they'd made it wheelchair accessible it'd have benifited just about every single person using the train... Not just disabled, but people taller than 5 ft 10, people with prams and pushchairs etc...
In a society that is as we're all being told of an increasing average age, with more elderly people, as time goes by 'adaptation's that we might see as being 'for the disabled' will gradulaly benifit a higher proportion of 'non disabled' people... Making buses easier to get on and off etc...

On a slightly different tack, but within the same region of one person's wants or needs - the sixth comment down, from Michelle:

http://blog.originalalamo.com/2009/07/30/menu-posted-for-the-julie-julia-feast/

This is a film about two people who were intimately involved in French cooking, and the French are well known for their love of meat dishes, often (un)cooked to a degree that no US restaurant would dare involve itself with for fear of lawsuits. I'm sure that there must be some fabulous French recipes that don't involve meat, but if a chef is going to put together a five course feast based on French cuisine, there's going to be meat, and a lot of it. If someone starts asking for vegetarian options they're messing with the chef's creativity, and although Trish a very nice person (and a bloody good chef), there are plenty of chefs who wouldn't take kindly to that. "You either have it the way I created it or not at all, and if you don't like that go somewhere else!!!".

We had a feast a few years ago, for which film I don't remember, but there was curry involved, and the menu was posted for all to see, as with this one. These feasts are complicated affairs, often involving several days of preparation, and split second timing on the night, both in the kitchen and from the servers. It's not easy to get four or five, or sometimes six, courses of gourmet food out during the running of a two hour film, clearing plates away between courses and also bringing wine out just before each dish is served - all done in the dark and with perfect timing. The menu is also printed and presented to everyone either as they go in or is at the table, so there's no reason for anyone to not know beforehand what they're getting.

So just as the curry course was going out, one of the servers came back to the kitchen and told the chef, John, http://www.austinchronicle.com/binary/1567/food_foodofile.jpg (that's John and Trish when Trish was still sous chef under John) that someone had said they were allergic to curry and could they have something else?

John did a very good impersonation of Gordon Ramsay at that point. "What the !!! You can't be ing allergic to curry, it's a ing mix of spices!!! What a ing idiot!!! No, they can't ing have a substitution!!! Didn't they read the ing menu before they bought the ing tickets? What do they ing expect us to do? Cook them an entirely different ing dish on the ing fly? that! They're out of luck!!!"

A chef, incandescent with rage, is a sight to behold

I think it might have been Darjeeling Express, so the fact that film's set in India ought to have been a giveaway that curry would be involved.

"Why yes, there IS a vegetarian alternative."

The Darjeeling Limited.

I don't know why, but I always want to call that one Darjeeling Express.