taste_is_sweet (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
taste_is_sweet) wrote2009-05-01 05:24 pm
taste_is_sweet) wrote2009-05-01 05:24 pm
Entry tags:
Place. My blog for Blog against Disablism Day (sorry about the mistake)
I need to give thanks to ![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
tigertale7, for posting about Blog against Disablism Day. I'm blogging about it too, because it's my life also and because it's important.
My husband is disabled. Most of you who know me are aware of this. He has Spinal Muscular Atrophy,, he was born with it, but it didn't get really bad until his teens. He's lucky, actually--most people who have 'type III' as his is called are in wheelchairs by his age. He can still walk. He's also lucky because it doesn't hurt. At least not physically.
His disability is as much a part of our lives as our son. It doesn't define him, but it limits him. He can't climb stairs, at least not unless they are few and very short and then it still takes so much effort it's rarely worth it. He can't get up easily if he sits or lies down. He can't run; he can't walk for more than twenty minutes. He can't lift or carry things over a few pounds. Going up inclines is difficult. If he loses his balance he will fall--it's impossible for him to catch himself since he has no muscle strength with which to do it. He falls more often when he's tired. There are many strict and unassailable boundaries to his world.
These limitations have become mine. I walk more slowly, even when I'm not with him. I look inside places we haven't been before to make sure he can navigate them. I make sure the buildings don't have stairs. We don't go to parks unless there's a concrete path. We don't go swimming together because most pools don't have a disabled entry to the water. If we go to the beach he stays in the car.
He spends a lot of time in the car. His life is a series of missed moments, things I have done with Javier or on my own because he is simply physically incapable of doing them. He stays in the car or stands at the sidelines, waiting for us. He is always waiting.
He has never been able to pick up our son.
It took me a full year of our relationship to really understand what his disability meant. It's not the obvious things--the stairs, the danger of falling--but the day-to-day inconveniences that people who are fully-abled can barely conceive of unless they witness them: disabled elevators on the farthest end of a building with things stored in front of them; three steps to get into a building, four to get to the washroom; cramped hotel rooms that mean tripping hazards; long walks between terminals at airports; heavy shopping carts; friendly dogs off leashes; things stored below waist-height; no empty disabled parking spots; out-of-service elevators. There are more. So many more that it would be impossible to write them all. It's impossible to even remember them all, but they are constant and everywhere.
And I, slowly, inexorably, have been drawn into his limitations. I am always waiting too--for elevators, for the courtesy carts at airports, for everyone else to exit first, to find a place where he can sit down, for him to catch up to me. I hug him gently, never push past him, carry almost everything, go first to make sure he can follow, pick things up off the floor.
He hates to ask for help, so I have become his help, his advocate, his defense. I clear the way, help lift him, tell the staff about his limitations, reprimand people who aren't willing to understand. He hates to put people out, or to seem different. I make sure he gets help anyway, even if it makes him angry.
I think he believes sometimes that I find him a burden.
I don't. His disability is a burden; he isn't. I hate his SMA, what it's done to him, what it's done to me, what it will do to our son. Javier already pretends to 'walk like daddy'; he knows daddy can't go to the park with him, that daddy never lifts him up. Mommy always metes out discipline. Right now he doesn't care. I worry that one day he might. I know that Dom hates that he can't be the kind of father all our neighbors are--throwing baseballs or playing soccer, teaching their children to climb on the monkey bars or ride bicycles, pushing them on the swings. He is everything else a father should be: present, attentive, gentle and loving. Javier loves spending time alone with him, loves sitting in his lap and having conversations. His daddy is as big a person in his life as I am. But physically I am mother and father both, and I don't know enough and I'm not strong enough and sometimes I fear that I can't do it.
I hate how oblivious so many normal people are. I have even wished on occasion that Dom was in a wheelchair, because that at least would make his needs obvious. That way, at least people would know to walk more slowly, to point out the elevator, to not push, to wait. Our cities were built by the able-bodied for the able-bodied. When you live with someone disabled it's obvious how much they were an afterthought, how little they were thought of at all. The message is subtle, but pervasive: There is no place for you.
I have heard disabled people refer to themselves as 'differently abled'. I used to agree with that idea, but I don't anymore. Being disabled means you are limited in where you can go, in what you can do. There is almost no spontaneity, not much that is as effortless as it is for the able-bodied. You have to plan more, notice more, think more about things that others take for granted or don't think about at all. There is no place for you, so you have to ask, or beg, or force them to make one.
My husband is disabled.
tigertale7, for posting about Blog against Disablism Day. I'm blogging about it too, because it's my life also and because it's important.My husband is disabled. Most of you who know me are aware of this. He has Spinal Muscular Atrophy,, he was born with it, but it didn't get really bad until his teens. He's lucky, actually--most people who have 'type III' as his is called are in wheelchairs by his age. He can still walk. He's also lucky because it doesn't hurt. At least not physically.
His disability is as much a part of our lives as our son. It doesn't define him, but it limits him. He can't climb stairs, at least not unless they are few and very short and then it still takes so much effort it's rarely worth it. He can't get up easily if he sits or lies down. He can't run; he can't walk for more than twenty minutes. He can't lift or carry things over a few pounds. Going up inclines is difficult. If he loses his balance he will fall--it's impossible for him to catch himself since he has no muscle strength with which to do it. He falls more often when he's tired. There are many strict and unassailable boundaries to his world.
These limitations have become mine. I walk more slowly, even when I'm not with him. I look inside places we haven't been before to make sure he can navigate them. I make sure the buildings don't have stairs. We don't go to parks unless there's a concrete path. We don't go swimming together because most pools don't have a disabled entry to the water. If we go to the beach he stays in the car.
He spends a lot of time in the car. His life is a series of missed moments, things I have done with Javier or on my own because he is simply physically incapable of doing them. He stays in the car or stands at the sidelines, waiting for us. He is always waiting.
He has never been able to pick up our son.
It took me a full year of our relationship to really understand what his disability meant. It's not the obvious things--the stairs, the danger of falling--but the day-to-day inconveniences that people who are fully-abled can barely conceive of unless they witness them: disabled elevators on the farthest end of a building with things stored in front of them; three steps to get into a building, four to get to the washroom; cramped hotel rooms that mean tripping hazards; long walks between terminals at airports; heavy shopping carts; friendly dogs off leashes; things stored below waist-height; no empty disabled parking spots; out-of-service elevators. There are more. So many more that it would be impossible to write them all. It's impossible to even remember them all, but they are constant and everywhere.
And I, slowly, inexorably, have been drawn into his limitations. I am always waiting too--for elevators, for the courtesy carts at airports, for everyone else to exit first, to find a place where he can sit down, for him to catch up to me. I hug him gently, never push past him, carry almost everything, go first to make sure he can follow, pick things up off the floor.
He hates to ask for help, so I have become his help, his advocate, his defense. I clear the way, help lift him, tell the staff about his limitations, reprimand people who aren't willing to understand. He hates to put people out, or to seem different. I make sure he gets help anyway, even if it makes him angry.
I think he believes sometimes that I find him a burden.
I don't. His disability is a burden; he isn't. I hate his SMA, what it's done to him, what it's done to me, what it will do to our son. Javier already pretends to 'walk like daddy'; he knows daddy can't go to the park with him, that daddy never lifts him up. Mommy always metes out discipline. Right now he doesn't care. I worry that one day he might. I know that Dom hates that he can't be the kind of father all our neighbors are--throwing baseballs or playing soccer, teaching their children to climb on the monkey bars or ride bicycles, pushing them on the swings. He is everything else a father should be: present, attentive, gentle and loving. Javier loves spending time alone with him, loves sitting in his lap and having conversations. His daddy is as big a person in his life as I am. But physically I am mother and father both, and I don't know enough and I'm not strong enough and sometimes I fear that I can't do it.
I hate how oblivious so many normal people are. I have even wished on occasion that Dom was in a wheelchair, because that at least would make his needs obvious. That way, at least people would know to walk more slowly, to point out the elevator, to not push, to wait. Our cities were built by the able-bodied for the able-bodied. When you live with someone disabled it's obvious how much they were an afterthought, how little they were thought of at all. The message is subtle, but pervasive: There is no place for you.
I have heard disabled people refer to themselves as 'differently abled'. I used to agree with that idea, but I don't anymore. Being disabled means you are limited in where you can go, in what you can do. There is almost no spontaneity, not much that is as effortless as it is for the able-bodied. You have to plan more, notice more, think more about things that others take for granted or don't think about at all. There is no place for you, so you have to ask, or beg, or force them to make one.
My husband is disabled.
no subject
Lots of good thoughts to you and yours.
WP
no subject
I hadn't thought about it either, funnily enough. Maybe that's because Pat's limitations aren't so obvious. I'm sorry about that.
But, it is what it is, eh? You love them and you accept the limitations.
no subject
no subject
I have to admit, I didn't know that you were disabled either. But I sure as hell never thought you were lazy!
no subject
(Anonymous) 2009-05-02 12:12 am (UTC)(link)I found the best way to combat these thoughts was to not have them any more. Easier said than done but I disregard the negatives as much as I can these days. It has helped.
no subject
no subject
I'm an adult who has a mom with a disability that most people don't really get. It didn't become a disability until I was older, but I fully understand why my mom can't really come and visit me now and why she couldn't visit me when I lived in California or make it to my graduations. I know that it kills her that she can't. I wish it didn't kill her, because I do understand how much she wants to and that is more than enough for me. People show love in all sorts of ways. There isn't a 'normal' for love. We can feel it when we're loved and I'm sure Javier feels how much Dom loves him.
no subject
I know he does, which is wonderful. I just keep imagining him being miserable because his daddy can't come to something. I also hope that knowing about his daddy's limitations from the time he was tiny will make it much easier to understand and accept.
&hearts: You're awesome. :D
no subject
My sis was diagnosed with JRA when she was 11, the symptoms tried to take over her life when she was 18. She is now 38, a mom and one helluva photographer. She can't do a lot of things, but like your husband she has a helper in her hubby and an incredible son who learned all her differences as he grew and has become a compassionate, patient, young man who owns a maturity and appreciation for life that most 13 year old boys never have.
My sis is Amazing. She's suffered through more pain in a given day than I could tolerate in a lifetime, but she'd gnaw her own hand off before willingly asking for help. Stubborness is a virtue, I suppose.
I also work with adults with developmental disabities in my job. I marvel over their ability to accept how the world in general views them and still manage to carry on their day with smiles. I'm usually the only one who gets frustrated when people in the grocery store give them hard looks or speak to them like they're stupid. They have taught me a great deal.
I'm glad your husband has you. And I'm glad your son will grow up to know that love does not diminish when a parent can't lift them up and swing them.
**big fat squishy hugs**
no subject
Hearing about your sister's son certainly makes me optimistic for my own. And your sister sounds amazing, too. I'm sorry she's in such pain.
Hugs back! Thank you!
no subject
no subject
Your B.A.D.D. post
Unfortunately, this is SO true! My boyfriend goes into restaurants that we're planning to go to, to make sure the restrooms are wheelchair-accessible, so I can eat without stressing out. I'm lucky that he's willing to do whatever he can to make my life more enjoyable.
Re: Your B.A.D.D. post
I remember years and years ago going to a restaurant in Toronto that had an accessible stall in their washroom, except the washroom was above several steps. I wasn't sure if it was more hilarious or more appalling.
I'm really glad that you have someone who is able to check things out for you.
no subject
I can understand if that's not something he wants to consider, as it took me a while to accept that maybe getting a dog to help me get around would be a good idea, instead of making me stand out more than I already felt I did.
You and your husband are coping fantastically, even though I know it doesn't always feel like it.
no subject
no subject
no subject
no subject
Yes. That. And what gets me even more is that mixture of pity and resentment disabled people are treated with by the not-my-problem generation. It's like being disabled automatically equates with being a little less than human, and that's thoroughly disgusting.
no subject
no subject
(Anonymous) 2009-05-06 05:21 pm (UTC)(link)I think he believes sometimes that I find him a burden.
I don't. His disability is a burden; he isn't." really hit home for me. I can't thank you enough for participating in BADD this year: I'm so glad to have so many different perspectives included.
NTE
www.neverthateasy.blogspot.com
no subject
Thank you so much for doing this and creating a forum I didn't even know I needed. It meant a lot to have a reason to talk about my feelings about my husband and his disability and what it's meant for us both and our son.
I'm happy that this resonated with you.
no subject
This part broke my heart because it made very vivid the realities of his life: He spends a lot of time in the car. His life is a series of missed moments, things I have done with Javier or on my own because he is simply physically incapable of doing them. He stays in the car or stands at the sidelines, waiting for us. He is always waiting.
To be honest, I'm grateful to live someplace where ADA is in force. I've visited many parts of the world where there are no handicapped parking spaces, no accessible bathroom stalls, no elevators or ramps: just lots and lots of stairs, stairs, and more stairs. As I trudge up yet another flight of stairs (usually lugging something heavy), I always think about what life must be like for disabled people in these places. The constant, pervasive, unspoken message that if you're not absolutely healthy and fully functional, don't bother going out of your home, because you're Not Wanted Here.
What the world misses out on by not welcoming those who still have so much to contribute, eh?
no subject
Thank you very much for your comment. I have often wondered the same thing about how disabled people might get around in places where no concessions seem to have been made for them at all. I am grateful that we live in a modern city in Texas, where not only are most buildings only one-level, but all the new ones are built to make it at least a little easier for Dom to get around.