Back in 1999, my husband, Garth and I started a non-profit
association called the National Autism Registry (NARY). The sole purpose of
this organization was to secure the ability for individuals with developmental
issues to access the community. Our first endeavor, which was an idea that emanated
from a personal experience that we had on a vacation, was the development of
the original NARY card. This card was basically the size of a business card. It
had the individual’s name on it and identified the person as having autism.
(Later on, we had to take off the name as we had such a huge request for the
card). It also contained a paragraph requesting that the individual and their
party be allowed to cue the line. It explained the reasons why the individual
with autism had trouble with waiting. The family was to present the card at restaurants,
establishments and other community-related places. The secondary benefit of the
card was autism awareness. Fourteen years ago, autism wasn’t the buzz word that
it is today. We were still at the point that we needed to educate the general
public. So, the cards also were an avenue for that. Many families reported
wonderful results, though we had some issues that needed to be dealt with. We
sent out over 7,000 of these free cards worldwide. (Later on the second NARY
card was developed, which was used to explain why our children had meltdowns.)
Well, then families began asking about Disney. So we
approached Disney, and after speaking with certain individuals, they told us
that they would allow individuals with autism to cue their lines as long as
they brought a doctor’s letter verifying that the individual had a disability
that prevented them from being able to wait in long lines. So, the policy
began. It was amazing. For the first time, many of us were able to bring our
children to Disney and have a successful experience.
Through the years, I believe that Disney became lax in verifying the disability
or the HIPAA law now prevented them from doing so.
It’s not surprising that people began to get wind of the VIP
treatment individuals with special needs were getting. And I guess, they are
jealous. Yes jealous!! Can you believe that the general public is jealous? Of
us? You may think it is resentment they are feeling, but I totally disagree. It
is jealousy pure and simple. There they are with their typically-developing
children, waiting for the rides, sometimes for a long time, often in scorching
heat, and our families are being escorted into the special area inside the
ride, where it is cool, and then being put on the ride quickly. Then they go to
the next ride. And there is another one of “our” families feeling very entitled
and being able to just show their pass and then get escorted into the special
area by one of the Disney personnel.
God forbid there should be some sort of benefit to having a child
with autism.
So some people who did not have issues themselves or a
special needs child forgot about Karma. They decided to rip off the system. They
tried to figure out how they, too, could be a “caregiver” for the day and
access the special needs area at Disney. Then Disney started to have public
relations problems. Not only were there tons of people who had legitimate
disabilities and needed special access, but now they had a few scammers.
Honestly, do you think there are tons of people who are “hiring” the
handicapped to take them through Disney? My guess is that there were a few bad
apples, but in general, there are really a lot of people who legitimately can’t
wait in line due to medical disabilities. So now, regular people, those without
special needs family members and do not believe in scamming, are having to wait
in line while it appears that everyone and their mother is getting in the VIP
area. They are complaining to the powers that be. I get it. I really do. I see
that Disney needs to handle this. The last thing Disney needs is to lose more
business. The economy hasn’t been great for them. They announced this week they
are discontinuing the special access pass for individuals with disabilities and
requiring them to use their Fast Pass option. They are under the impression
that this will fix the reverse discrimination that some people feel is going
on.
So here’s the thing. They are not fixing the problem. They
are creating a whole new one. Now they want individuals with disabilities to
use their Fast Pass option. This is the option that they offer to the general
public. It’s a great idea for people who are able to understand that you go
over to the ride, get a ticket for that ride for some time in the future, and
then do something else while you wait for that time. Then return to the ride,
possibly still wait a bit, and then eventually go on the ride. But seriously,
does that seem like a good idea for a) People in wheelchairs who already have
some issues with mobility. They have to travel over to the ride, then go
somewhere else for a time and then go back to the ride. Really? How many rides
do you think they can do in a day? Or b) Children with autism. And even some
adults. Let’s see how they do being taken over to the ride-then told they are
not going to go on the ride and have to leave the ride without going on it.
Then trying to figure something else to do while they are having a meltdown,
because they left the ride without actually going on it. Then after settling
them down, it’s finally time to take them back, which makes it look like you
are reinforcing them for poor behavior after they had a mood swing by taking
them back to the ride. Then having to wait a bit before going on the ride. (If
you have been around a child with autism, I know you understand that last thought.
If you don’t, I’m not sure you can follow it. You sort of have to be there. Sorry).
From what I am reading, Autism Speaks had some hand in
developing this new procedure. Are you kidding me or what? If they did, I’d
really like to know who the person was over there that came up with this idea.
This is the best they could do. Huh?
This is 2013. I am really throwing my hands up in the air. I
stopped making and sending out the original NARY Card in 2008. I thought my job
was done. I was under the impression that our society understood autism enough that
we didn’t need to constantly explain it. It seemed to me that we had made
adequate headway in accessing public and private community areas. Autism has
been in every major magazine and newspaper both in print and online. It’s
embedded into television and movies. You would be hard-pressed to find someone
these days who didn’t know someone who has autism. But this is a BIG step
backwards. And it’s about jealousy. Plain and simple. We get something they don’t.
You had better take this very seriously, because next it will be our child’s
benefits that they are going to be jealous of. Our children’s medical or disability
benefits. They are not taking the time to really look at the entire picture.
They are just looking at the one thing: special access at Disney. This is
really a big problem, and if Autism Speaks really had something to do with the
new procedure, I’m really scared.
So, I re-thinking getting back into the NARY card business.
Maybe I need to make a new card. Perhaps I need to say something like: “This
individual has autism. Please do not be jealous that he or she has difficulty
waiting in line and sometimes is entitled to special treatment. I would like to
invite you to my house for the day. Perhaps, that would give you a different
perspective. Call me.”
********************************************************************************
Meanwhile, I hate to be "Negative Nelly" all day. Come and visit my son and I at our website, thechocolatespectrum.com. Help us raise money for autism while you shop for chocolate treats. Use code First25 to receive 25% your order. Sign up to receive free special recipes (some gluten and casein free).
