HydroAssoc conference
So tonight was the dinner dance and "talent show".
I've always felt very uncomfortable with the idea of a "talent show" for this particular crowd. While many of us are very high-functioning, most of the ones who participated tonight were not. Maybe they did feel like they wanted to participate, but it just seems exploitive to put an obviously severely handicapped person in front of a microphone, announce they're "going to sing"...and then, instead of using a karaoke-style tape that's instrumental-only, they use a tape of an actual professional vocal performance, which the handicapped person is supposed to sing over. Regardless of whether they used a professional tape or a karaoke tape, the AV ppl had the tape cranked up so loudly there was no way to hear the participant sing.
I'm on several hydrocephalus forums on Facebook. I've been scolded before for telling people, when they've asked for my input, that such things as tumbling are widely considered a Very Bad Idea, because it screws up the fluid dynamics of the shunt. I've also been scolded for mentioning that, for a lot of us (I never said "all"), exposure to strobe lights is also a Very Bad Idea. Strobing lights can be a seizure trigger for many people, myself included.
Well, one of the talent show acts was a group of three young girls. The front of their shirts had rapidly blinking, strobing lights. Several of them did tumbling as part of their dance routine. I literally could not watch most of the performance, because the lights on their costumes posed a real risk for me.
After the "talent" part was over, and they switched over to the "dance" part, they continued to have the music miked so loud I couldn't hear myself think. I only stayed for maybe twenty minutes after the dance part began, because the loud music was too much sensory overload.
HydroAssoc was founded as an advocacy/support group for people with hydrocephalus. I started attending their biannual conferences in '98. When I started going, they were clearly focused on all aspects of hydrocephalus, and clearly cared about trying to do the right thing by everybody. They had a personal stake in things, because the founders of the group lost their 22 year old son to complications from hydrocephalus.
Well, it was after the original founders retired from day to day operations that they decided to start doing the dinner dance and talent show. Originally, it was a purely optional event, for which you paid extra for a ticket.
In the years since '98, the registration fee has crept steadily higher, as has the hotel fee. They're also now charging for individual sessions, instead of having the registration fee cover that. The registration fee is now more than twice what it used to be, because the dinner dance is no longer optional, but "included". It seems HydroAssoc has somehow managed to forget how expensive it is to treat hydrocephalus, and how many families have inadequate or nonexistent insurance. Yet they keep raising the fees to cover the cost of the "luxury" hotels they've routinely chosen for the conferences. How is the average family of a person with hydrocephalus supposed to be able to afford to attend the conference, under those conditions? Would it be so wrong to hold the conventions at a Holiday Inn, instead of a Marriott?
Many hydrocephalics have dietary and sleep restrictions. Yet they don't take the dietary stuff into account at all, their idea of "gluten free" is to serve salad twice a day. Many of us literally can't get up for the early (starting around 8am) sessions, because many of us need more than 8 hours of sleep.
They're also permanently closing the original headquarters, located in San Francisco. Their sole remaining office will be in Washington, DC.
In short, they're ignoring the very real needs of what should be their core constituency, and they've gone from "let's help ppl with hydrocephalus" to "let's raise money!" Oh, which reminds me--the current head of the organization has no personal stake in hydrocephalus at all. The *sole* criteria HA looked at when they hired her was her "vast fundraising experience".
It's sad to see a once-vibrant organization come to this. I don't think I'll be back in 2014.
I've always felt very uncomfortable with the idea of a "talent show" for this particular crowd. While many of us are very high-functioning, most of the ones who participated tonight were not. Maybe they did feel like they wanted to participate, but it just seems exploitive to put an obviously severely handicapped person in front of a microphone, announce they're "going to sing"...and then, instead of using a karaoke-style tape that's instrumental-only, they use a tape of an actual professional vocal performance, which the handicapped person is supposed to sing over. Regardless of whether they used a professional tape or a karaoke tape, the AV ppl had the tape cranked up so loudly there was no way to hear the participant sing.
I'm on several hydrocephalus forums on Facebook. I've been scolded before for telling people, when they've asked for my input, that such things as tumbling are widely considered a Very Bad Idea, because it screws up the fluid dynamics of the shunt. I've also been scolded for mentioning that, for a lot of us (I never said "all"), exposure to strobe lights is also a Very Bad Idea. Strobing lights can be a seizure trigger for many people, myself included.
Well, one of the talent show acts was a group of three young girls. The front of their shirts had rapidly blinking, strobing lights. Several of them did tumbling as part of their dance routine. I literally could not watch most of the performance, because the lights on their costumes posed a real risk for me.
After the "talent" part was over, and they switched over to the "dance" part, they continued to have the music miked so loud I couldn't hear myself think. I only stayed for maybe twenty minutes after the dance part began, because the loud music was too much sensory overload.
HydroAssoc was founded as an advocacy/support group for people with hydrocephalus. I started attending their biannual conferences in '98. When I started going, they were clearly focused on all aspects of hydrocephalus, and clearly cared about trying to do the right thing by everybody. They had a personal stake in things, because the founders of the group lost their 22 year old son to complications from hydrocephalus.
Well, it was after the original founders retired from day to day operations that they decided to start doing the dinner dance and talent show. Originally, it was a purely optional event, for which you paid extra for a ticket.
In the years since '98, the registration fee has crept steadily higher, as has the hotel fee. They're also now charging for individual sessions, instead of having the registration fee cover that. The registration fee is now more than twice what it used to be, because the dinner dance is no longer optional, but "included". It seems HydroAssoc has somehow managed to forget how expensive it is to treat hydrocephalus, and how many families have inadequate or nonexistent insurance. Yet they keep raising the fees to cover the cost of the "luxury" hotels they've routinely chosen for the conferences. How is the average family of a person with hydrocephalus supposed to be able to afford to attend the conference, under those conditions? Would it be so wrong to hold the conventions at a Holiday Inn, instead of a Marriott?
Many hydrocephalics have dietary and sleep restrictions. Yet they don't take the dietary stuff into account at all, their idea of "gluten free" is to serve salad twice a day. Many of us literally can't get up for the early (starting around 8am) sessions, because many of us need more than 8 hours of sleep.
They're also permanently closing the original headquarters, located in San Francisco. Their sole remaining office will be in Washington, DC.
In short, they're ignoring the very real needs of what should be their core constituency, and they've gone from "let's help ppl with hydrocephalus" to "let's raise money!" Oh, which reminds me--the current head of the organization has no personal stake in hydrocephalus at all. The *sole* criteria HA looked at when they hired her was her "vast fundraising experience".
It's sad to see a once-vibrant organization come to this. I don't think I'll be back in 2014.