New “coat” !
Welcome to our new blog! Borias and I have been meaning to move to wordpress for some time now, and happily, the move has been made! I have a little time this three-day (birthday) weekend. I kind of want to skip over the birthday part. I’ve been feeling older, and so has Borias. Very disheartening to say the least. I’m hoping part of it is the heat, he’s having bad allergies, and was on antihistamines. That made him drink more, and it’s harder for him to hold his bladder then. It wasn’t helping, so we’re stopping those now.
It’s shocking how fast dogs age. Seemingly right in front of your eyes. Ten is by no means ancient, though many people seem to think so. “Oh, that’s OLD for a Shepherd!” they’ll gasp. I tell them his mother lived to 16.7 years old. So there. He’s from tough stock. His bad back takes it’s toll, though. I saw an eleven year old GSD running after a frisbee, during a photoshoot the other day. Made me wonder if it weren’t for his herniated disk, would he be doing that, too ? I’m grateful that he has mobility still. But I’m bummed to see the vigor and stamina wane. Gone are the days he could walk to Hillcrest, the park, and back home. We could cover a lot of ground in our day.
He still likes to dance, though. It’s just a little less crazy and spazzy. And watch out! He’s the pigeon police!
"Typical" Child
Last night, I was looking on Craigslist, for a handicapped shower chair, actually, and came across a very disturbing ad. Like nothing I’ve ever seen before.
It was a couple, with two disabled children, looking to adopt a “typical” child, so they can experience them calling them mommy and daddy. So I suspect their two have fairly severe disabilities, possibly impairing their relating to their parents.
Still. Well, here’s the ad:
My husband and I have two very disabled children, and want very much to adopt a typical child. We love our girls, but want a chance to also parent a child who can call us mommy and daddy, who can go to the beach, who will grow up and get married, etc. We have much in home nursing help with our disabled girls, and do have the love and time for a baby, child, and member of the family. Every agency we explore, says that no birth mother would want to choose us, because we have handicapped children, and it makes us “undesirable”. That is crushing, because we REFUSE to abandon our girls to an institution just to pursue the hope of experiencing parenthood as we had hoped it would be. Please consider a private adoption, if you are expecting and confused. We are a Christian home, loving with each other, and our girls.
It left me cold. This is a Christian family so they say. Yet, they’re obviously not fulfilled having children with a disability, and yearn for a “normal” child. I don’t know what agencies would tell a couple that anyone would find them “undesirable” for having children with different abilities, but, if that is indeed true? Shame on them.
A little backstory. My mother had me nearly five decades ago. Back then, doctors urged her…a mere 19 years old and single, to give me up to institutionalization. How could she possibly care for a child with a disability? Well, she did, and a bang up job I might add. Oh sure, she made mistakes. Hell, what parents don’t? I can tell you that after five grades of going to a special school, where I was not learning squat, and hungered for knowledge, she pushed and pushed hard to have me “mainstreamed” into regular school. By sixth grade, I was going to classes with “typical” children, and eating up what I was being taught.
Having a disability is simply a challenge in life. We all have those. Whether it’s physical, mental, or whatever, life throws us challenges. I believe we are to rise up to those, and become stronger because of them. Can you imagine a life with no obstacles to overcome? I can’t! I’ve learned SO much from having obstacles in my path. And believe me, I’ve had a lot.
What is that communicating to these two girls, that their parents yearn for a “typical” child? That they aren’t good enough? Normal enough? Don’t fulfill their dreams? It seems to me, that perhaps they aren’t focusing on what they CAN do. What they might be gaining by having children with special needs. Clearly this communicates that their children are not good enough for them. Oh yes, they’re loved, but still, they are lacking. Can you imagine if they read this later in life?
Folks, there is no normal. No “typical”. Is it really all that important that a child be able to verbalize that you are mommy and daddy ? Isn’t that obvious?
Well, I just don’t know what else to say. I’m grateful for a mother who had the spirit and guts to raise a child with a disability as if I was any other child. No coddling, making sure I was as independent as could be. I’m so grateful to her for that. Because that would be the true disability, raising a child to think that because they’re not “typical”, they are less than. That they are not capable individuals, who indeed can achieve and be all they can be.
When it rains it pours?
Sheesh. I’ve been a bit remiss in posting lately, with stuff interrupting life. In a rash of more bad luck, I had an accident. In my wheelchair. My sweet red chair, that I’ve tried so hard to not scratch, despite taking nose dives on a regular basis….well, it broke. The frame where it connects to the front wheel snapped clean in half.
I was going down my alley, walking Borias to Starbucks, when I heard a pop, sort of like running over a bubble wrap piece. I shrugged and kept going, got across the street, and splat! Fell flat on my face and side so hard, I saw stars. The front wheel went out from under me, and I didn’t realize it til I tried to get back in my chair. Talk about being up poo creek!
A neighbor was walking by with her dog, and offered to help, saying she was going to get duct tape. I wasn’t so sure that was going to really help much, so I called 911 while I waited. It was a monday, and I thought it might be slow enough to send help for this situation. Paramedics were just down the street, and arrived right away. So we duct taped up the chair, and the guys lifted me back in. I got walked back home, but fell out one more time in the alley. A neighbor happened to be outside, thankfully, and helped me back in. What a pain!
As if that wasn’t bad enough? I went to the company that made the chair-my second frame, because the first one wasn’t the right dimensions, and got it welded. Then I found out they were going to refuse to make me another one different from this one. All I wanted was a slightly longer wheelbase, so I don’t fall out so much, and stress the frame. Doesn’t seem like an unreasonable thing to request, does it? Nope, they were going to stick to their guns on this one. Unbelievable.
So I said I’d get back to them, and got a referral to an attorney. I hurt in places I didn’t think I could hurt. I had an expensive lens in my backpack that got slammed to the sidewalk. I would think the attitude of the wheelchair company in question would be just a little bit more accommodating. Sad it has to come to this, seems to me it would be the right thing to do, to make it right.
Only problem is, in the meantime I won’t be getting that new frame while this is being disputed. And I’m really scared the weld is not going to hold. Not a good feeling to be wheeling around worried that your chair is going to slam you to the ground again. I can get reimbursed for a new chair, of course, when this is settled. But I don’t really have a spare 2 grand around to get one. So I’m trying to think of something. Maybe I can get one through Medi-Cal at last, though that can take months. I’ll just have to be very, very careful in the meantime!
No going zoom zoom with Borias!
Rock Star with a Heart of Gold
photo by Danna Kinsky (http://dannakinsky.com)
Going to concerts when you have a disability is can be a huge challenge. For one thing, there’s the monopoly that is Ticketmaster. I have yet to ever be able to get a decent seat from them, while trying for disabled seating. Even the seconds in the beginnings of the first day of sale. It’s as if those tickets just don’t exist…and I doubt the ones in premium seating do. Those are likely held back with the other premium seats. Then there’s the attitudes of the venue management and assorted others in charge towards people with disabilities. Don’t even get me started on that…
It’s a total crap shoot with venues. Some go out of their way to accommodate their disabled patrons, others treat us as if we are an inconvenience, or that we should be grateful for the concessions they do make. OK, it’s great that they make spaces for wheelchairs fairly close to stages now, as opposed to only at the furthest regions, but I don’t think anybody takes into account that at a rock concert, people stand. We who are permanently sitting, just have a hell of a time seeing around those folks. And a big part of a concert is seeing the performance. Actually, the point of it.
So, I must admit, I had been blessed in seeing one of my favorite bands, U2, last tour. I got to be up front, or on the outside of the elipse, for all but one of the ten shows I attended. Nothing beats the energy shared between you and the band when you are that close. The interaction, and connection is amazing. It’s the best way to see a show, as I’m sure anyone would agree. Granted, it’s not easy to get those seats. But when one is disabled, it’s exponentially difficult. I have quite a number of “horror” stories with trying to get tickets to see artists I admire.
Perhaps that’s one reason I had never before been to a Pearl Jam concert. After all, I’ve admired them since they began. I remember being moved by videos that would come out, listening through headphones to Vitalogy and Ten while wheeling around L.A. I just love Eddie’s passion, and the intense emotion in his voice. But it was when Into the Wild came out, with it’s accompanying soundtrack, and it had reached deep places in my soul, that I just had to go see Ed’s solo tour when I learned of it coming to town.
That turned out to be serendipitous. I was booted out of the venue, when an abled-bodied couple showed up with Ticketmaster print outs for wheelchair seats. The tour manager was admiring Borias while I was outside, distraught at the turn of events, and I told him what happened. He was appalled at the treatment the venue manager had given me, and arranged for me to come the next night. I also got to meet Eddie for the first time. He is such a kind, generous person, and truly impressed me beyond my expectations. The next day, he asked if I had been taken care of, and I ended up with great seats, and got treated to a mind blowing, amazing show.
Cut to last week. I couldn’t get tickets to Pearl Jam’s tour, other than the worst wheelchair seats. Luckily, a friend I had met at Ed’s show managed to get me a ticket to L.A., in the LOGE section. My first show. Well, it was less than optimal, as I couldn’t see over people for the vast majority of it. I wanted so bad to experience what I had at U2, feeding off the energy, seeing faces. I wanted so bad to be up front, for just one show. But at the venue in L.A., there just didn’t seem to be a way. Despite many spaces for wheelchairs going unoccupied, security would not allow moving around.
So I waited for San Diego. My last chance. I knew it would be a really great show, and I had my heart set on having a good view. Fortunately I secured a fan club ticket from that friend again, and I went to ask someone in charge about upgrading to closer wheelchair seats. He went with me to the box office, where I already heard they were out of everything, but when we got there, some floor seats had just opened up. (Hmmm, perhaps held back the entire time tickets were on sale?) I was very excited, and so was my friend. These were one section back from the stage, and it looked great on paper.
That high was dashed when I got in the venue, and realized while people crowded in for Ben Harper, that it was so close to the section in front, that people standing were going to completely impede the view. I was grateful to have gotten lucky enough to be down on the floor, obviously no small feat. But it truly sucks to not be able to see. At all. The security down there was really nice, and they got someone in charge to come down, just to see if there was anything that could be done about this. A woman with an all access pass, from the venue showed up.
“Unfortunately…” the first words out of her mouth, the kiss of death. “We have these seats sectioned off for wheelchairs, and if you can’t see here, we are happy to have you go up there to the top”.
Yeah, the back of the venue, nosebleed seats. No thanks. Disappointing to say the least. There was no budging her by the book attitude. Frustrating. I even asked her if I had had front row seats, they would not allow me to sit up front, and she replied that these were the seats set apart for wheelchairs, so no. Unbelievable. So I figured I would move around a little again, and try to find an opening to see somewhere. When the show started, I was pushing myself up with my arms trying to see through gaps. I went to the end of the aisle, seeing if I could sit there, and got an earful about leaving 6 feet or something. (Seems to me an ADA rule turned against us) And that it was a “fire hazard” for a wheelchair to be in any other area. Yeah, like we can’t wheel like hell to save our lives from a fire…
Then something amazing happened…bless this random act of kindness, a security guy had me come in and sit by the railing to backstage, with a good side view of the stage. I swear, I broke into tears of joy. I couldn’t believe how wonderful that was of him to do for me. Now I could truly give myself over to the show, and feel that connection with the performance. Eddie was belting “I don’t wanna take what you can give…I would rather starve than eat your bread…I would rather run but I can’t walk..”
I screamed and danced and felt the most astounding elation! And what a show it was! So far exceeding expectations, it was truly magical. I even got a drumstick towards the end, to my surprise.
When I saw the L.A. show, I watched while several people up front were given tambourines by Eddie, and I wished I could get one really badly. Well, my wish came true, as he went and got some more during a number, and ran over to my side, leapt up on a huge speaker and leaned down to hand me one!! Yes! People were congratulating me, and I clung tightly to it while watching the rest of this amazing show. I was so thankful that these big, burly security guys had a heart, and let this gal have the time of her life!
After the show, I went with my friend to the backstage exit outside, and hung out with some other fans while waiting to see who might come out. I don’t usually like to do this, but the fans were really respectful and cool, and maybe I could get the tambourine signed. I got Borias out of the car, so he could hang with us, too.
The last black SUV (what is it with bands being chauferred by dark SUV’s?) started to come out, and stopped. A big security guy came out, and announced that Ed wanted to say hi, but don’t ask for any signing or anything. He said I was good with my tambourine, but I didn’t want to ask anyway. Ed was clearly pretty inebriated, and in good spirits. He said thanks for waiting for him, and saw me, and said “Ah there you are..” took my hand in his and kissed it. I thanked him for the show and tambourine. Then he asked who this is, meaning my dog. I told him his name, and he stood back and said “I like that!” and pet him.
How could this night get any better? I now have this tambourine for a souvenir, a permanent reminder that some people can do some incredibly cool things. Of a kick-ass amazing concert. And that rock stars can have a heart of gold.
