Something happened yesterday that made me realize we have a LONG WAY TO GO before we can say all disabled people are treated like decent human beings, always.
Nicky hasn’t been able to walk since he was 15 years old and damaged his feet beyond repair. With RDEB, when an area gets wounded too often, once it does heal (if it does heal), it remains incredibly weak. At this point Nicky can “transfer” from bed to wheelchair, or from wheelchair to car seat etc, but he often gets blisters just from doing that. This means he’s confined to a wheelchair, and due to his skin fragility, he cannot do many things besides watching TV or playing video games.
Something that I do for Nicky for fun is take him to see a live taping of TV shows. We’ve seen several over the years, and this is something that’s a lot of fun for him, he loves it. We can’t always be so lucky to get one of the stars of the show like Kaley Cuoco take a photo with us, but they have always been kind and accommodating. A few months ago at the end of the taping of “Man with a Plan”, the writers gave Nicky a copy of the script. It was amazing.
Kaley Cuoco leaned over the balcony overlooking the set to take a photo with Nicky & Garrett! <3 She ROCKS!
I just recently had gotten tickets to go see One Day at a Time’s live taping and Nicky was very excited. I made sure, as always, to email the studio in advance to let them know he was in a wheelchair so they could accomodate him. They responded that all was good. I honestly didn’t give it a second thought because this has never been an issue before. The various studios we went to, Paramount Studios & CBS studios mostly, usually have a ramp or an elevator-type thing to get any wheelchair guest up to the audience area. For those unfamiliar with the setup, the set/stage is on the ground level, and the audience is on a pedestal-type area. There are TVs on top of us so we can see what’s happening and what the filming looks like and a lot of microphones to “record” our laughs. A comedian is on stage with us keeping us informed on what’s going on, making us laugh and even gives away gift cards, while a DJ plays music to keep us entertained.
Well, this time around we were in a for a gigantic disappointment. We arrived at Sony Entertainment Studios in Culver City around 4pm after fighting Friday’s Los Angeles traffic for 2 hours. When they ushered us in we were told that the audience pedestal area had no wheelchair access – at all. We were a little confused at first. We were put in a secluded area, surrounded by purple curtains, next to the catering, away from the set, with a TV and NO view of set/stage and the overall filming of the show we came in to see. The guy told us “You can still see everything that’s going on on the TV in front of you” and another lady told us “You’ll still have fun”. Really? I didn’t drive for 2 hours in Los Angeles’ Friday afternoon traffic to sit in a secluded area with a TV with no view of the actors, comedians and everything else going on as they filmed the show. What was the point of us coming here at all? If I wanted to see the show on TV I would have stayed at home!!!
I wasn’t going to take this sitting down. I went in and talked to everyone backstage. I even told them:”Look, my son weighs 100 lb wet, he is in a very light wheelchair, if I can get one guy on each side to lift him up the stairs, that would be the ‘least’ you could do.” Scrambling around, they came back stating to me that this was against their “fire code”. I even had a (cute) fireman come and tell me this. As I sat there with Nicky I felt defeated. The show started taping, we barely heard and saw absolutely nothing as the comedian started telling jokes and they presented the actors. Why are we here? We cannot see anything! I started getting teary-eyed and Nicky felt bad for me. Imagine that! I did all of this for HIM! He’s my angel. Still, I could tell he was very upset as well, especially when we realized the TV in the room didn’t even have any SOUND! What?
So, I got up and we left. Nicky didn’t want to stay. As we were leaving I told everyone why. It’s my hope they felt bad, a few people bowed their head and said they were sorry, but as I wrote to everyone connected to the show on Twitter, Facebook and email, nobody has yet to respond.
Does anyone give a crap? Probably not. “Shame on them” is all I can say at this point.
Love & Light,
