Monday, September 22, 2008

MOM: Is DEAFNESS a DISABILITY?


With all of the discussions generated by the posts on Ethics and a debate that has ensued on the Pediatric Cochlear Implant Circle regarding "to accept or not to accept a Disney Pass for children with Disability" on behalf of a deaf child with a ci, I am curious to know the adult Deaf perspective on such issues. While checking out Dianrez's site for one of my posts, I found this:

Why do we say we are not disabled?
How is it that we do not regard ourselves as disabled? Is it because of the way we were raised, to be not different from other people? Is it because our difference is invisible and outwardly we look and move about like everyone else? What is the origin of this "not disabled" feeling? This attitude is so pervasive that we object to any surgery or expensive devices as less-than-successful attempts to "fix" us to meet Hearing standards.

The majority of the world considers us disabled, often to our consternation. When we say we want deaf children born to us, the world hollers in indignation, "HOW DARE YOU!?" They consider it extreme child abuse. Mostly, though, Hearing people take no notice and therefore omit making room for Deaf people in their communities. In an earlier time, people would shunt aside Deaf citizens, saying with impunity, "Sorry, we have no provisions for hearing handicapped people." As a child, I was taught, "it's a hearing world and you must adapt to them, not expect them to adapt to you." We were considered selfish and immature for thinking otherwise.

Yet, we gratefully accept special considerations such as schools for the deaf, colleges dedicated to deaf students, interpreters, government assistance, and electronic devices, among others. In seeking jobs, we willingly accept any extra help that comes our way. In public areas such as airports and meetings with public servants i.e. police, we tread with unusual care, mindful of bad experiences that our people had. Despite what we say, inwardly we seem to accept that we are different and that it means accepting help, if somewhat reluctantly.These special accommodations, some of which were legislated, are lifesavers for most of us.

Can we refuse them? Certainly we can, but what purpose does it accomplish? Will it cause people to finally believe we are not disabled as we carry on with pad and pencil, less than perfect speech, expensive aids and struggle to survive at the bottom of the employment applications pile? If we continue to insist we are not disabled, all that will happen is politicians happy to cut budgets and voters not noticing or caring.

Have those of you with deaf children or even you, yourselves ever used a "Disability Pass" to have quicker access to rides at a Disney World or other amusement park? Things got a bit heated up as parents asserted motives for using or not using the pass. Parents whose children have other disabilities in addition to deafness stated that they would never request a pass "only" for deafness. Another mother stated that she absolutely does not consider deafness a disability.

I posted this:
Re: Disney and Ethics: Pass or no PassI've been following some of the thread kind of in dismay. Deafnessis known as the "invisible" disability because it is in fact invisible. There are many ramifications associated with deafness that we as parents deal with on a daily basis. We as parents make decisions every single day to try to make the lives of our kids easier. This is not a black and white issue, this is a gray issue.

If my kid goes to speech therapy four times a week and suffers sitting in that high chair from the time he is twelve months of ageand we choose to take a family vacation to Disney to reward him andourselves for all of the fatigue and stress and work behind his "invisible" disability, I probably would consider getting that pass to avoid one more frustration in his life. But I'm not sure. Someone once said to me that when considering disabilities if a person sees another child with a physical disability, they go out of their way (if you are lucky) to help that person. How many times have you seen people frustrated or irritated by your child screaming or asking someone to repeat something that they missed? Deafness is a disability. Each child is different and each family's situation is different.Would I have thought twice about requesting a pass when Jordan was a 3 year old frustrated child? Yes. Would I request the pass now? No. Would I judge another parent for taking that pass? Never.

Another Mother wrote in response to yet another mother:

I agree that Disney having the pass is definitely a good thing. I don't think that anyone has said that it is not. For your child, it clearly is a need. For mine, though, it was not. I think the point that I and others have tried to make is that it isn't a perk we should take if we don't truly need it because it is unfair to those who truly do need it and because it sends the wrong message to our kids.

It's all in the message...how do we want our kids to view their Deafness?

FYI:
Six Flags changes its line policy for disabled patrons
Sept. 19, 2007
Six Flags Inc. has stopped allowing disabled patrons to skip to the front ofride lines and is now requiring them to get a boarding time from anattendant and return then, as any patron can do with the amusement parkcompany's "Flash Pass."The new policy took effect Sept. 7 and applies to all 21 Six Flags theme andwater parks, including Hurricane Harbor, also in Arlington, said Kendell Kelton, a Six Flags Over Texas spokeswoman.The policy was prompted by abuses, including patrons who feigned disability and others with disabilities who gave wrist bands allowing them to move to the front of lines to others who are not disabled, she said."We would get complaints from people in line or our employees," Kelton said.The change made for a rocky visit to the park Saturday for Joey Miller of Burleson, mother of Noah, 7, and Mallorie, 9. Miller said that her children are autistic and that Mallorie also has epilepsy. She said she bought season passes this year and took her children to the park eight or nine times this summer. "It is the only thing we found that they could do out in the community that brought some joy into their lives," Miller said.

Miller said she learned of the new policy when she arrived at Six Flags withher two children, two therapists and a niece. She said they had misgivings but decided to give the system a try. She said they went to a ride, booked a time to return and then left. But that didn't make sense to her daughter, Miller said. The girl threw herself on the ground and bit her therapist, Miller said."My children don't understand time," she said. "The things that are reasonable to us make no sense to them. Anything more than five or 10 minutes can be a screaming meltdown for my kids.""I knew we couldn't go through this on every ride. The stress could bring on a seizure for my daughter," Miller said. Park officials, however, said they hope the extra step -- having to make an appointment -- will cut down on cheaters and be fairer for everyone.

The Flash Pass option is essentially a reservation. Guests wait as long as everyone else is waiting, but not in line. Guests can leave and then comeback and get directly on the ride. Similarly, Disney theme parks offer a "FastPass." Most rides and attractionshave handicapped access, but in most cases guests with disabilities have towait in line like everybody else, said Andrea Finger, a Disney theme parks spokeswoman. Disney parks, however, may provide different accommodations depending on thedisability of their guests, she said.Policy for disabled park patrons Six Flags Inc. no longer allows park patrons with disabilities to move to the front of ride lines. Under the revised policy, guests with disabilities should seek a Flash Pass reservation and return to the ride at that time to avoid waiting in line.

24 comments:

Paula Rosenthal said...

I saw the thread on the CICircle one day, but didn't have the time to respond. I do now, so here goes...

I am "guilty" of using the Disney Pass on more than one occasion and I don't have any qualms about it.

In addition to not waiting on the long lines, having the pass allows adults and children with hearing loss to get better seats at the attractions, thus being able to hear the program better. You also are provided (upon request) with a flashlight and script if they don't offer captions at that particular place. For the programs with the rear window captioning system, if you don't go on the line for people with disabilities, it is often very hard to get the proper seats to make those captions appear on the personal screen they give you.

I have never "played a disability card" in my life and I don't feel that taking Disney's (and other parks') available services for people with hearing loss is an injustice to anyone else. Nor am I sending the wrong message to my daughter with cochlear implants. The message she is learning is that it is okay to ask for help when you need it. We need it at the parks. They are not all about rides, there are many pre-shows before the rides and shows with music and dialogue, often in darkness where we can't see to read lips.

Why shouldn't we use available services so that we can enjoy our vacation like every other family?

Jodi Cutler Del Dottore said...

Hey Paaaaaaaaaaaaula!
This:
The message she is learning is that it is okay to ask for help when you need it. We need it at the parks. They are not all about rides, there are many pre-shows before the rides and shows with music and dialogue, often in darkness where we can't see to read lips.

Is an excellent point. Hugs Girl, Jodi

Jodi Cutler Del Dottore said...

PS. Thanks for your comment on yesterday's blog...so nice to be comprehended *smile* Me

Dianrez said...

This made me think back to when a disability pass was available in Canada for their Expo and Wonderland attractions.

At that time it was simply a reduction in the cost of the pass, with no special accommodations for plays or shows with dialogue played over speakers.

Had it instead offered front row seating or interpreters, definitely we would feel entitled to it!

However, the pass represented for us a statement: "you are receiving less than others, so you are allowed to pay for less."

Jodi Cutler Del Dottore said...

Interesting perspective...thanks, Jodi

Prince Andrew and the Queen Mum said...

ditto to what paula said on CI circle- i didn't have time to read everything..

there is a local theater here that includes sign in their children's programs (I think it is called interpretive sign??) they WANT those who need to see it to sit up front. the question is..do you need it?

i agree that it is a deserved reward too.. i mean our kids are asked a whole lot more of them than other kiddos.. so yes! having a smoother holiday is an all go for me.

In autism there is a small faction that also believes autism is not a disability... it is.

you say:
if a person sees another child with a physical disability, they go out of their way (if you are lucky) to help that person. How many times have you seen people frustrated or irritated by your child screaming or asking someone to repeat something that they missed? Deafness is a disability.

-
i could blog all day on that paragraph as it describes autism completely. Last week my DS called a downs syndrome girl an ogre. He was not being mean- he was just saying it as he saw it. I cried and there is a longer story here than what I am telling. what he was doing was not what a typical kid does- but it is not acceptable. We also had the secruity sent to our car one day when my DS tantrumed 90 minutes in the car and it was unsafe to drive. (I am hear some of ya'll getting judegmental on me now.) But back to HI.. it is HARD to listen - speaking regarding those w/ a hearing impairment that use auditory- it takes ENERGY. and even w/o the autism- that adds to fatigue. Think about having a slight cold- or pms- or a small headache...or a better analogy is test taking- it is draining. it isn't painful but it is harder. And so therefore- my conclusion is that you should use it;) Your child may not even be telling you that it is hard and they may not even realize how hard it is as it is all they have ever known. they may make it look easy... and some handle it better than others... but still remember that kids are kids.. and this adds yet another difficulty level to the day. So why not make it a bit easier.

If you use ASL as your primary mode of communication I can't comment on that because I do not do that. I think that may be a different issue...

mishkazena said...

I was raised to be equal to my peers. I wasn't treated differently because I couldn't hear.

No, I will not use a pass because I am deaf. In fact, I will get infuriated if I see a healthy able-bodied deaf person using a pass to cut short the lines to the rides.

You see, I am also physically disabled. I remember one time Deaf people being surprised that I have a pass and demanded why I have it. They didn't believe me when I said I am physically disabled (talk about an invisible disability)

Here in MD, the Deaf Community tried to convince the State Assembly to pass a law permitting Deaf people to use the handicapped parking spots. When I found out, I was outraged. They can walk. Their excuse is that they cannot look back. Oh, really? Bullshit. You can use my eyes around and use common sense. I call that taking advantage of hearing people's ignorance to abuse the system.

Because I know what it is like to be Deaf and what it feels like to be Deaf and physically handicapped. There is a very BIG difference.

Yes, if I see a Deaf person abusing the handicapped parking lot or using the pass for rides, I will confront them. Using the pass for shows is a different story because they do need good seats to hear the performances.

Rides, hell no way!

As you can see, I feel very strong about this.

::::Stepping off my soapbox::::

Jodi Cutler Del Dottore said...

Amy,
Thanks for weighing in and for sharing the autism-hi perspective. In regard to the down syndrome situation, I can only imagine your reaction, knowing how sensitive you are. Our kids don't know the difference...how hard they really work, sometimes we need to make an educated and ethical decision as to how to reward them. It's tough having to ALWAYS be morally correct in the midst of a lot of shit. Hugs, Jodi

Jodi Cutler Del Dottore said...

Mishka...*wiping brow* you are obviously extremely passionate about this topic and I think you actually shocked me. Thank you for your perspective and for getting pissed off for the first time, I think, since I've "known" you. I was unaware that you had a physical disability as well. Have you ever actually confronted a person? I've been known to shoot a really mean look *smile*
Hugs,
Jodi

deafmommy said...

Mishkenza,

Hi, this is where I disagree with you on this, at Universal Studios, we had to wait with others, they had captioned movies, we couldn't even see them, we were so far behind, it was a 3-D ride, they would have captioned televisions to introduce the ride, had we got first in the line, we would have been able to see the captions on television, so we were at disadvantage. Be careful of what you wish for because once we eliminate our disability access, we will end up losing a lot of things.

Paula Rosenthal said...

Mishkazena, DeafMommy is reiterating what I was trying to say in my post. The rides at Disney are not "just" rides. They nearly always have a pre-show on a video screen. What good are the captions if you're not standing or sitting close enough to read them? How is that fair to our deaf/hoh kids? I don't "cut" lines because me or my daughter are deaf, I'm using the available service of helping her get the most out of her trip both visually and auditorally. If it is just a ride, then we don't use the pass, but most often there's a hearing accessibility issue of some kind.

mishkazena said...

Deaf Mommy, didn't you see what I said at the end, if there are shows? I mentioned there is an exception. I was referring to rides only, not the rides with the shows.

Jodi, yes I did. Some listened to me, but always have excuses. The others, who don't know me personally, ::: chuckling ruefully::: told me.. no you are not disabled! You look healthy! If you can use the HC parking permit, so can I! The problem is I do look strong physically. (again it is an invisible disability)

But yes I will continue to tell them, I mean the young obviously healthy deaf kids, off.

mishkazena said...

Paula, that is a different story. As you can figure, I've not been to Disney in ages.

Here in VA, at King Dominion, now called Six Flags, Deaf people were enraged because I used a disability pass, then they went over to the office and demanded disability passes. They didn't believe me when I told them I do have a physical disability.

Guess what happened? Hearing people standing in long lines got very upset because they saw many deaf young people, obviously very healthy, cutting in the lines. Who got penalized? The physically disabled people who were forced to wait a little longer, so the employees can appease the hearing people, due to the abuses done by young healthy deaf people.

Again I am talking about rides without movies. The rides with the captioned movies are different. :)

Prince Andrew and the Queen Mum said...

mish...can i ask what your disability is? is it visible or invisible? i find your posts most interesting. I have a congenital heart problem..no one sees it.. but it presents various problems/difficulties. i went to disney once upon a day-- 30 years or so ago. I am guessing they had their own disability honor system at that time... i'll have to ask mmy folks. I had 4 heart surgeries by the time i was 10 and spent most of 4th grade in FL avoiding the cold MI winters... so I'm sure we went there and I'm quite sure my mom would not have had me stand in line lOL!!! now it is just things like..hey- let's go biking..um.. well- can't really keep up w/ ya'll. I also homeschool DS- and I do curb what I do i the physical arena. It's no real big thing for me now- i'd not personally ask for a pass (I would for DS...HI and ASD)... Anyway- just curious as I read your comments..

candy575 said...

Wow...well, I had written up a post on "Disabled" but never published it yet....I will soon.

Technically deaf/hard of hearing people ARE disabled. There is no going around it. You'll find some that hate that term and others that understands why it applies to them. It does not, in any way, indicates that we are "broken."

If you look at legal terms, for example, ADA. What makes the latest amendment more stronger is the definition about who is "classified" as disabled. It gives us rights to protections and so forth.

It is just a technicallity. No big deal.

I don't make a big deal out of it because I know that the label itself does not define me.

As far as getting free passes, why not?! I have no qualms about it because I have to spend a fortune on hearing aid batteries. I also have to go without understanding everything when there is a guide that talks 100 mph on some National Park tours such as Harpers Ferry in WVA. Actually, it was that National Park that I discovered that there are free passes for disabled people and the guide saw my husband and I conversing in signs, he motioned to us to come into the office and fill out some simple form and presto! We got a National Park pass that gives us free admissions to all National Parks and discounts on camping. Awesome!

As far as getting into the front lines, common sense dictates that if we can walk, let the wheelchair or those with much more severe disabilities have that perk.

Christian's Mommy said...

This topic totally interested in me, and I was thinking about blogging about it the other day...but I'm not in the mood to get a bunch of hate mail.

I definitely consider my son's deafness as a disability, not because he can't hear and I can. It's because the fact that he can't hear makes his life harder than most.

When we go see the Wiggles next year, we're requesting accommodations for him. He deserves to have the same experience as the other kids. And if being able to see the actors mouth's better will do that, then heck, I'm all about it.

mishkazena said...

Well, legally deaf people are disabled, but they are NOT physically disabled that they wouldn't handle long waits.

Shows and movies, I totally can relate to that because the Deaf people need the front seats to be fully accommodated. But regular rides? Scoff. Handicapped Parking? Scoff. I would be embarrassed if I abuse the system if I don't need it
It's not the way I was raised.. taking advantage of a system at the expense of others. Remember I said the physically handicapped people paid a price afterwards because they were forced to wait longer when hearing people saw how healthy deaf people were abusing the passes. They are not stupid and naturally they gave the employees a lot of grief. There are consequences when there are abuses of the system.

Anonymous said...

We are disabled, whether you like it or not. And if the parks are having trouble with people feigning disabilities to get in the lines, then the blame goes directly to the parks, not disabled people! The parks need to rearrange their lines, make sure that their rides are completely accessible for all disabled people, maybe redesign their layout and mapping so that everyone can enjoy the rides without limitations. Disabled people should not be blamed or looked down if they have disability pass, that's not fair. If too many people are abusing the system, whose fault is it? Not us.

Anonymous said...

One more thing, should the parks take responsibility to assess what kind of disability we have in order to give us the right kind of pass? That would be like going in a judgement line, that can get pretty scary and perhaps overly abused. It would also mean I would have to carry my audiogram to constantly prove that I am deaf and if I forgot it, I would miss the accessibility offer at the park or whatever. Think about it. Its good that people take us at face value and I wouldn't want to see when time comes that we would have to prove our disability and letting people have power in determining what accessibility we can or cannot get.

kim said...

This is a great discussion topic! Personally if I had a young Deaf child I would be inclined to use the pass, but not for myself because I am an adult.

However, it reminds me of a situation with the ferries here. You get a break if you're disabled. One of my friends with MS has a "handicapped" identification on her license plate, so she automatically gets half price. Her disability is just as invisible as mine, since she doesn't need a cane or anything, but she tires easily. However, it doesn't make any difference on the ferry. She has to walk up the stairs no matter what.

In my case I have to ask for the discount because I don't have a special license on my car. Thing is, I talk perfectly so it's weird for me to tell them I need a "disabled" boarding because I can't hear. But you know what? I'm in worse shape on the ferry than my friend with MS. Last time I ferried alone, I was in the bathroom when the call to disembark came. I didn't hear it and held up a huge line of cars cuz I got back to my car late. A Deaf friend of mine actually ended up on the wrong ferry once because she didn't hear what line she was supposed to wait in, and then she ended up at the WRONG island.

Wherever we go, we don't appear 'disabled' but we are inconvenienced in many situations because of lack of accommodations.
I feel there are occasions where special treatment is warrented. I prefer the honor system. We can judge when we're inconvenienced enough to ask for the discount.

Lolypup said...

I have a question for mishkazena, You keep saying over and over and its starting to sound like a broken record, "yes pass for rides with shows, and no for rides without!"

My question, how am I supposed to know which rides have what until I get on them. That dosnt happen until after standing in long lines only to find out im sitting in the back and cant see.

Or I utilize the free pass service provided, enter and let the attendant know im deaf and get the seat on the ride that will benefit me the most.

If I see someone entering the que with me in a wheelchair, of course ill step aside and let them go first. I mean thats commonc ourtesy.

But my question, is how do we know which rides have what.

especially since you keep stating it over and over, I guess you been so many times you know all the rides by heart, so you know which ones to stand in line for and which ones to use the passes!

mishkazena said...

Lollypop,

I wasn't referring to the rides at Disney, but at Six Flags and other rides.

Still you brought up a good point :)

Oh the reason why I repeated these two phrases is to make clear so others won't jump at me and say what about those with the captioned movies? ;)

elizabeth

sara said...

What about things like a disabled Access Pass for state parks (NY does this)... If you receive SSI/SSD then you automatically qualify, but if you don't then you need a doctor's signature. If I recall, the form I had specifically stated that a bilateral hearing loss of 80dB was one way to qualify for a pass.

You could say, But why does a Deaf/HOH person need to get into a park for free? or need a discount on camping? And on the other side you could argue that since it's listed on the form, why not take advantage?

One example where I am grateful for "disabled" access plan is my cell phone. I don't use any voice minutes, and thanks to AT&T's TAP plan I don't have to pay for any voice minutes. Though they could be like T-Mobile and just offer a data-only plan to everyone.

MM said...

Mostly, hearing LOSS defines disablement, depending on when you acquire it, and how much loss there is, these are truly disabled people by that definition. I suppose it may be argued born deaf are NOT disabled since it is their norm anyway.. although some of them feel they are disempowered by mainstream, and disempowering is disablement, if so, then yes they are too. It's about specifics. Most of us are disabled. Whilst being disabled via disempowerment, I can't see the logic of then insisting you aren't, is there a scare factor involved ? deaf hate the disability tag ? 9 out of 10 support services give it via the disability tag....