Friday, April 13, 2007

Less Than

We had planned for weeks to come to the big event. The event was a special invitation for the physically and mentally disabled children for a fun afternoon consisting of a children’s play followed by lunch. We had never accepted many of these invitations, up until a few years ago, because, well, sometimes they are a lot of work and even if we plan on doing them, sometimes Dear Son is not able to due to health issues. I say “we” as in Dear Son and I.

The invitations were sent weeks ago. They are fairly detailed, in the sense that they require certain information regarding the children’s abilities or lack thereof. They need to know if they are deaf (they have two women who sign during the play), require a wheelchair (pediatric or adult), the child’s age and the number of people attending. They also want to know if the child must remain in the wheelchair so they know how many theatre seats they need to remove in advance to make room for the wheelchair. I responded by saying that Dear Son was 15, used an adult wheelchair and needed to stay in the wheelchair.

There are a few things which make the day a little tougher. On average, we need to start a minimum of four hours earlier to get ready for an event. In this particular case, I needed to get Dear Son’s g tube feeding started at 4:10 a.m. so he would be finished by 6:50 a.m. and then I have to allow another 15 minutes or so and hope he goes to the washroom prior to dressing him. I have to figure in time for him to go to the washroom, since there aren’t any bathroom/changing facilities there for me to change him. This means that he has to go to the washroom before we go and then I’ll double diaper him so he’ll stay dry until we get home. Once he’s dressed and we are ready to go, it takes another twenty minutes to take the wheelchair totally apart so it fits into the car, then travel time followed by another twenty minutes to assemble it again once we arrive, so we can go inside. All in all, a lot of lifting, since I’ll repeat the entire exercise for the ride home.

We arrive on time and enter the theatre via the handicapped ramp. The ramp is not to code (that means the elevation is one inch per foot) so it’s a steep ramp to go up. Dear Son is 150 pounds and the chair is another 100 so it’s pushing 250 pounds up the ramp. I have some trouble and one of the men offer to help me. We arrive inside the theatre and the usher asks if we are with the adult disability group. I say no and he proceeds to lead us over to the single row for the wheelchairs. This event has 800 attendees, most of which are disabled, and there are exactly six theatre chairs that have been removed for the “wheelchair kids”. Since Dear Son’s chair is so large, the usher decides that we can not sit in this row and tells me that we have to sit in the far corner of the theatre. To be exact, he takes us to the very last row and the furthest possible seat from the stage. The reason is because, the other row was only for “pediatric” wheelchairs and there isn’t any other place for us to go. Translated, it means, they didn’t plan well and didn’t remove enough seats. You have to understand that, for the “adult” disability group, there were several rows removed and plenty of wheelchair seating available.

I tell the usher that we are not going to sit there. I state that Dear Son can not see the stage from that position. I tell him that we were invited guests, and the purpose was to “celebrate” these kids/adults and that it’s not much of a celebration if we can’t view the play. He proceeds to argue with me and tell me in no uncertain terms that we can’t sit in the “pediatric” wheelchair row. I proceed to move Dear Son’s wheelchair back into the row, where he can see the play perfectly. We enjoy the show.

I couldn’t help but feel a little miffed by that situation. We were invited guests. It took a lot of preparation on our part to get there. That is not their issue. They failed to plan well on their side, so we should be inconvenienced? It was also a big deal because the event would be followed by lunch, which Dear Son couldn’t eat since he feeds through the tube and even if he could eat by mouth, he was never able to eat a cheeseburger or foods that weren’t finely chopped or pureed. In essence, we were there to see the play.

I wonder how many times disabled people are treated as “less than” when they go somewhere. Because they require extra assistance or particular seating, it’s a “problem”. It’s not usually a problem to get good seating if you tip someone well but apparently, if you need wheelchair seating, well, that’s a different story.

The rest of the day was uneventful and we had a great time. It was great being able to see and hear the play when you have good seats. It was interesting that the able bodied people who came late, a few minutes before or after 10 a.m., when the play was supposed to start, weren’t seated at the end of the theatre. No, the other patrons had to make way for them in the better seats in the place. Interesting.

A few days later, Dear Son’s Dad would experience a similar issue. He had wanted to include Dear Son in a huge family get together over the holidays. All of the relatives would be there, include the new “great granddaughter” who I must say, is cute as a button. But one relative who was hosting wasn’t keen on having Dear Son there. After all, the wheelchair is pretty big and he gets “in the way”. Of course, there are the g tube feeds and the pump/pole and well, it’s just a lot. Dear Son’s Dad was furious. Of course, I guess it’s only a big issue if you are a kid in a wheelchair. If you are an elderly adult, and people make accommodations to assist “you”, it’s o.k. But well, Dear Son, that’s another story. The new baby and all of the baby stuff, well, that’s not a problem.

I couldn’t help but think of these two events, as nothing more than “less than”. When people define you as “less than”, somehow you aren’t as desirable. If you take maybe a little more time to do things, well, you are “less than”. After all, we live in a “more than” society. We reward people who fall “above the curve”. We award those who strive to “get ahead”. We associate those qualities with winners and leaders and all of that good stuff. We don’t care much about the “less thans”. The ones who take a little more time to do things, the ones who are always “below the curve”, the ones that make the “other people” shine when comparisons are made.

But everyone can be a “less than” in a heartbeat. It only takes one accident, and your life can be forever changed. But I have to wonder, when will it stop? I think sometimes, what a different world it will be in a few years, as the baby boomers age and more disabled people will be living. Who will take care of them? And how will we treat them? Whatever happened to kindness? Is that the best we can treat people? Being disabled is not about being “less than”. Being “less than” is when you put yourself ahead of those who have less or are able to do less.

5 comments:

zoe said...

There is so much more planning that goes into an outing when you have a child with special needs. You can watch a play with a large group of people but what it took to get you there on time, and all of your son's needs taken care of so you both can enjoy the outing is more than most people can imagine or appreciate. It can be exhausting but I am sure you know worth every effort especially if Dear Son is enjoying himself.
One of THE hardest things is when a family function becomes an obstacle. It is more personal because it is family and family should be the safe place, the place where we are all accepted and welcomed and supported. But that isn't always true and that hurts. Our experiences can leave us feeling "less than" at times because of someone else's thoughtlessness or lack of information or sensitivity but in your heart you know that is not true. Dear Son is so much more and you have spent a life caring for and loving him and learning from him. Every time you make the effort to take him out, despite the hardships, that is a good thing. It is good for Dear Son and every person who encounters him whether they realize it at the time or not.
Dream Mom you have said it before and I agree with you 100%, it takes a heartbeat for a life to change. You do not always get to keep what you have. Life changes and a little kindness can go a long way. You are the BEST!! God bless you!!

jennifergg said...

Dream Mom, you said it beautifully. Thank you.

telern said...

I am continually amazed at not only your wisdom, but your gift with words. Thank you.

Karen said...

I am glad you stood your ground and took Dear Son where he would be able to see. The temptation for me would have been to say, "I give up" and leave. Good for you for not letting the usher's thoughtlessness ruin your day!

Chantel said...

Bravo!!! Bravo!!! You have help me see the world in a different light. I hope that myself and my family will learn from you and always remember that we as able people should never forget or set aside the disabled. God Bless you and dear son and his dad. Dear son is truly loved and your dedication should be a leason for us both with abled and disable children.

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