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SuperMouse's avatar

Can you share your thoughts on dealing with family situation (details inside)

Asked by SuperMouse (30772points) October 12th, 2011

I have a lot of extended family living locally. The family gets together for all the big holidays, the annual pie fight, and for various other celebrations throughout the year. I love my family and these get togethers and think it is especially awesome for my kids to spend time with cousins, aunts, uncles, etc. However, as many of you know my husband is a wheelchair user and not a single house where these events are hosted is accessible to him. He is pretty social by nature and would like to spend time with the family as much as I would. This is complicated by the fact that my family members don’t understand that there is more to a house being accessible then putting a couple of boards over the steps or a couple of strong guys pulling his chair up the steps. A makeshift ramp like this just won’t work and frankly I am not willing to force him to endure having people he barely knows yank him up stairs. DH is bummed that he can’t go to the gatherings; family is feeling like he is anti-social or avoiding them, and I feel stuck. So far I have left DH behind, attended the events, and endured the questions about where he is and why we don’t just figure out a way to get him in the door which is easier said then done.

I do know that the first most logical suggestion would be to host these things at our house, but that is just not an option. These folks all lived in town long before I arrived on the scene and there is a protocol in place for who hosts what and very little willingness to adjust that protocol. Now that we are settled in to our new home we are of course planning to host other gatherings for the family.

FYI, @gimmedat totally understands the issues here.

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30 Answers

digitalimpression's avatar

They are family. Just be honest with them and tell them about this instead of us. Just a thought. If they are good family, they will help you find a solution.

Kayak8's avatar

Portable ramps are omnipresent in the lesbian community—this is directly a result of a desire to ensure that ALL of our friends feel welcome and can participate in social gatherings. Not sure how much assistance your partner would need with a real ramp, but if you are able to bring along another sensitive friend who can assist you assisting your partner might help.

Boards are not a choice (they are a scary option, but not a real choice). A portable ramp is very different. Sounds like your family is doing their best to include you both but just aren’t real sure how to do it. You can help by providing information as to what it will really take.

I would tell my family that I appreciate their openness to including both of us and then tell them exactly what we need to make my partner feel comfortable. You may be pleasantly surprised at their willingness to go to some length to make it possible for your partner to attend with you . . .

SuperMouse's avatar

@Kayak8 we actually have a (rather large and unwieldy) portable ramp which we would be willing to bring along, I’m just not sure how we could secure it to the steps which are usually concrete. I’ll do a little research to see if I can come up with some ideas. BTW, it is totally awesome that you realize how scary the idea of using boards is.

@digitalimpression I have been honest with them, I brought this to The Collective in hopes of getting some other ideas to help solve the issue.

john65pennington's avatar

You have asked us on Fluther this question, now its time for you to ask your family this question. They have the answers you are seeking.

We all know the answer should be to allow you to have a family gathering, simply because your hubby and his wheelchair are best suited for familiar surroundings.

Go ahead, ask your family members for a change in protocol.

YARNLADY's avatar

Ask them to upgrade their houses, or buy you a professional style portable ramp.

Perhaps you could afford to get the stair climbing type of wheel chair.

john65pennington's avatar

Also, write one letter on your computer and forward a copy to each family member that has a computer. This is the best and fastest form of communication you could ever have with them.

AmWiser's avatar

You might want to suggest to those family members hosting the get together to invest in a portable wheelchair ramp suitable to their home. Of course offer to help with the cost if they aren’t able. I understand your plight.

bkcunningham's avatar

(I have no idea what the weather is like where you live. But, I’ll answer anyway.) Can you get everyone to make a donation towards renting a big tent and make a good portion of the festivities outside in the tent? I think it could be lots of fun and as the hostess, I’d be thrilled to have people outside in a tent for a portion of the fun instead of in my house. I’m being totally serious. Did you know some funeral homes will loan you tents for events?

Neizvestnaya's avatar

From now on, ask the hosts ahead of time if they are willing to help get the ramp set up in place so when you and DH arrive, no one’s flustered or feeling anyone is being put out. Add the ramp into the mix as just another part of the family get together set up.

Personally, I feel it’s awful no one else has thought ahead to help you guys so DH can attend.

JLeslie's avatar

I’m not clear, is it always at the same persons house? If so asking them to do some sort of improvement to the house might be reasonable. Unless it is bathrooms being too small, and things that really would be difficult and unreasonable for your husband to deal with. Also, if you live fairly local, why not do some of the get togethers at your house? You have a soecial circumstance, I think they should be accomodating once or twice a year. The people who like to host can still cook if that is there big thing, or whatever reason it is they prefer to host.

Neizvestnaya's avatar

Would any of your extended relatives be willing to allow you to pay for an access modification, like your parents, his parents or any siblings of his/yours you like to visit often?

Maybe once they come to your home and see how you set up inside as well as outside, they’ll have a better idea of what’s needed. Some of them may be embarassed to ask what they can change in the house and yards.

bkcunningham's avatar

My Mom was in a wheelchair for about 6 years before she died. Their house, my childhood home, wasn’t handicapped accessible. Neither was any of our family members. It isn’t that anyone is being purposely unhelpful, @Neizvestnaya, or inconsiderate, IMHO, in not thinking about things beforehand for someone who uses a wheelchair.

Until you deal with it on a day to day basis, you really aren’t aware of what is involved. It is always a simple thing to say carry the person, lift the chair or tote them here or there. Talking to the person who is being lifted, toted or temporarily ramped and empathizing with how it makes them feel, I think, is when it hits home to others.

I don’t think they are inconsiderate, just unaware.

marinelife's avatar

You will also need to ensure that the door to the bathrooms is wide enough to accommodate his chair.

Tell them about the ramp you have, and have some of the men take a look at it.

With good will on all sides, this can be addressed.

Be patient with them. Invite them over to your house (it can be a visit with my husband special gathering) and have your husband show them the accommodations that you have made.

SuperMouse's avatar

@JLeslie a couple of different people host, mostly it is two different houses. I am really not comfortable asking them to make improvements to their houses. @Marinelife, The bathrooms are almost inevitably too small, but if he can get in and out of the house itself that presents less of a problem.

@Neizvestnaya speaking to people in advance about helping out with placing the portable ramp is a good idea! We are not in a financial place to be able to afford to pay for modifications on their houses and I’m not sure if they might be willing to make them if we were.

Neizvestnaya's avatar

@SuperMouse: I once had a SIL with MS who would become wheelchairbound for lengths of time. I know for sure no one of her siblings meant to be insensitive but most of us weren’t sure what to do to make it easier for her. Planning ahead works so much better because then no feels slighted if they forget at the last minute to do particular things.

Simone_De_Beauvoir's avatar

I would, of course, stand more by my husband. People with disabilities are treated shittily in our society and you are correct in saying that makeshift boards (which must make your relatives feel like they’re reached enlightenment on this matter and should be thanked profoundly) are not enough. If I was in your position, the family gatherings wouldn’t be attended by my family because either my whole family goes or no one does.

GabrielsLamb's avatar

They can’t build temporary ramps, or how about the two biggest guys help him with his chair?

I don’t see the problem really, this is family and they all know right?

JLeslie's avatar

You know, every time I move up north from FL I am annoyed that houses, new houses, are built with narrow hallways and doors, even in larger homes. Not only have I become accustomed to these things being wider, but for people in wheelchairs it is necessary, let alone America is getting bigger in general. My inlaws house in FL even has all light switches at a lower height. Able body certainly don’t have any problem reaching a lower switch. Too bad there is not a movement to accomodate everyone in new housing. Of course with older homes this is more of a challenge.

I still say once a year they can all come to your house if you are willing to host. I completely understand not wanting to asl anyone to modify their house for a couple of occasions per year.

Ela's avatar

You could list out the functions, go through them with your husband (talk about the ones he’d like to go to) and narrow it down. Possibly start by only attending half of them.?
Go through the list and determine which homes are less of a hassle for him navigate.
Your family may make more of an effort to be a bit more accommodating if they see how inconvenient it can be for you and your husband.

CWOTUS's avatar

These sound like pretty big productions anyway: lots of people, lots of food, lots of cleaning up. Why not suggest that the hosts rent a local public venue, such as the K of C, Elks Club, etc. and all pitch in a bit to cover the rental. (It will save major wear and tear on someone’s house, too.) That would obviate the problem of not just how to get into the building, but bathrooms, too, which must be a consideration.

Pandora's avatar

Are all the steps into the home concrete or brick? I have a cousin who has a brick steps but the back yard steps are wood as are the steps leading from the garage. I don’t know how much a ramp would cost to put in but it may be more than they can afford plus it may not be convenient for them. Do they even own the home or is it rented?
I don’t think they are trying to make him feel uncomfortable but it sounds like they are doing the best they can.
Talk to them about finding a way to secure the ramp to their steps so he can come and go without feeling like a bother.
Or you can do like @YARNLADY suggested and buy one of those chairs that can climb steps.

Buttonstc's avatar

Obviously makeshift boards as ramps is no solution as it’s just way too dangerous.

However, due to my experience with a close friend of mine who is totally wheelchair bound, there is something I find puzzling.

You use the phrase “force him to endure being yanked up stairs by total strangers.”

Of course you shouldn’t force anything on anyone. But an inquisitive open discussion is different. And I’m puzzled why that option is totally off the table.

Has your husband expressed to you his discomfort at having him in his chair (not separately) carried (not yanked) up the stairs? Or is this your interpretation?

The reason I ask is because this is what my friend Terry would usually do. Obviously when going out to dinner we chose ramp accessible restaurants all the time.

But the first time I invited him to a party at my apt. in Phila. This was my biggest concern.

He was extremely independent and always drove himself everywhere and had his whole system for getting himself and his chair in and out of his Range Rover firmly established. Anyone trying to help him with it would just be getting in the way so he explained the first time I offered help.

But narrow row houses with steep stairs are ubiquitous in Center City Phila. Even if one had a ramp, there was scarcely room to put it.

So when I opened up the discussion about it, he just assured me not to worry about it, he would manage just fine.

He explained that he has to navigate steps all the time all over the city. There are usually a few strong guys who don’t mind helping out. As long as there’s one for each side of the chair and somebody else to hold the door, I’ll tell them exactly what to do he said. Just let me handle it.

And that’s exactly what he did. There wasn’t any yanking involved at all. And they were total strangers to him. He directed the whole thing without a hitch. And does it all the time when there’s no other way. To him it was just his reality. A necessity of life that he was used to dealing with in a city full of row houses.

He was also a very social guy and he told me that once he went through his moping helpless years immediately following his accident, he realized that if he didn’t take charge and make things happen, then nothing would ever he figured it out.

Getting people to carry him in his chair up stairs was just a fact of life to be dealt with.

I don’t know if he had some mystery method so people wouldn’t yank him or drop him or not. It didn’t seem like it. With the help of a couple of very willing husky guys and his affable nature it just went smoothly.

I’ve also heard John Hockenbury, a wheelchair-bound journalist who traveled all over (even third world nations) with limited access speak to the challenges of getting around.

His opinion was that even in the most primitive nations and even out in the bush, people in those areas had a much more accepting and natural attitude about dealing with people in wheelchairs. There was an overwhelming spirit of everybody being willing to cheerfully help out and all pitch in to get the job done. No awkwardness and he seldom had to ask for help since it was offered before he had a chance to open his mouth. And it just wasn’t that big a deal.

He and his chair got carried in plenty of places where there just wasn’t any other way. And he was fine with that even tho it would have been far easier to just work at the station in NY where he could go back and forth from his fully accessible apt to his fully accessible workplace, restaurants, etc.

But he wanted to travel the world. So he was willing to get carried where necessary and push himself around by brute force the rest of the time.

He didn’t use a motorized chair and neither did my friend Terry because they’re simply too heavy to allow for much flexibility.

Does your hubby have a motorized chair or a regular one? I’m certainly no expert on disability issues but have had a little bit of firsthand experience with Terry and another friend of mine.

So I guess I’m a little bit puzzled as to why being carried upstairs in ones chair is so completely out of the question. Has there been a previous bad or painful experience with that or what?

I’m honestly not trying to oversimplify things cuz I realize how difficult it is to deal with a disability in hundreds of little ways that most of us are unaware.

It just seems like a shame for such a social guy to have to be this isolated when there are usually willing hands to be found when there are stairs but no ramps.

Of course figuring out a way for ramps to be feasible is ideal but sometimes it’s just not possible. Cost is a major factor.

I’m not saying your husband should HAVE TO or be forced to have him and his chair carried. No one should be forced to do anything they truly don’t want to. I’m just curious as to why he or you are apparently so strongly opposed.

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SuperMouse's avatar

@Buttonstc I hear what you are saying, hopefully I can clarify why he is uncomfortable being lifted up stairs by people who aren’t familiar with how to do it and keep him safe. My husband’s injury is C5/complete. It is a cervical injury and he has no sensation or movement from the armpits down, this combined with the fact that he is 6’2” tall and a buck seventy-five means that balance is an issue. His own father hasn’t been able to do it without launching him out of his chair. He has two grown sons have it down to a science and can get their dad up any stairs anywhere, but they are both married with lives of their own and not usually available to help out. I am really looking forward to the day our younger boys can get him up and down stairs as easily! He is independent, drives himself everywhere with hand controls and his van equipped with a lift but because his injury is so high and his is so tall he does not transfer himself and drives from his chair. He is also 21 years post injury so he is pretty much through the mopey phase.

BTW, I read John Hockenberry’s book Moving Violations and thoroughly enjoyed all of his stories of world travel. I was especially moved by one story about a trip to Israel and his adventure getting himself up and down the stairs in an NYC subway station.

GabrielsLamb's avatar

@SuperMouse It’s not that difficult to get a flat piece of wood at home depot and allow him to use it as a make-shift ramp. Just lay it over the stairs and secure the ends with bricks and make sure someone is there to help secure it just in case. No lifting, no inconvienience.

SuperMouse's avatar

@GabrielsLamb that has been suggested many times but it really doesn’t work. The wood is really not strong enough to support him and his chair and placing it over the steps – even with people are trying to secure it is like climbing a ladder that is standing on ice.

Buttonstc's avatar

Wow. That really is a difficult situation and I appreciate your further explanation. I can certainly understand why that much lack of control can be truly scary. And being taller makes it more difficult still.

I hope I didn’t come off as being judgemental because I really do realize that in most situations in life what works for many people doesn’t necessarily work for all as each individual circumstance is unique. And your hubbys degree of injury and paralysis is certainly much more limiting than most.

The only other thing that comes to my mind is an interview and demo I saw with Dean Kamen, a pretty prolific inventor and engineer.

He developed a motorized wheelchair that could truly go anywhere, up stairs, through beach sand, etc.

The stair climbing mechanism contained a gyroscopic feature enabling the ability to balance itself perfectly. And going upstairs, the person and chair were tilted and balanced BACKWARDS so that the person was in a recumbent position with no danger of falling. It was the most unique thing I’ve ever seen. Obviously a device like this is not inexpensive but the amount of versatility that it can add to a disabled persons life is remarkable.

This interview and demo was a number of years ago and that was obviously the prototype model. I’m not sure when (or even if) it’s gone into production. But he does have a website you can check.

His most current project (in conjunction with the US military) is the development of a revolutionary type of mechanized prosthetic hand and arm with an unprecedented degree of sensitivity and flexibility. The guy is an amazing inventor.

Well you and your husband certaiinly have a major challenge on your hands. I do think it’s about time that the rest of your family could rethink their inflexibility about their traditions of who goes to which house. Hopefully calling for a “summit meeting” of sorts where this could be dealt with more cooperatively could be an option.

And if they choose to be totally intractable and inflexible, if it were me, they wouldn’t be seeing much of me either. I like what was written previously about where I go my hubby goes as well cause we are family. You either deal with the whole package or none.

IMHO It’s time for them to step up to the plate here and be willing to do some collective problem solving and switch up old ingrained habits a bit. You and your husband shouldn’t be expected to risk severe injury just because they can’t be bothered to consider changing the locations of events.

“Because that’s the way we’ve always done it” just doesn’t cut it anymore.

Buttonstc's avatar

…evidently he’s changing his website around right now.

SuperMouse's avatar

@Buttonstc thanks for the info, I am going to check out that site. I love stuff like that! You didn’t come off as judgmental at all and I appreciate the input.

I guess the bottom line is that I am going to have to talk to the family and see what can be worked out here and hopefully we can start hosting some functions.

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