You know it’s going to happen. After awhile you develop radar for it.
You and your husband are at the movies with some friends. Out in the lobby, you chit chat about the movie, then everyone makes plans to have dinner together at one of the friend’s house two Fridays from now. We extend our regrets. Even though we really wanted to go.
Why? Because my husband is a wheeler.
Private residences are almost never accessible to a wheelchair. There are always a few steps up the front walk to the door or sometimes there is just one step from the garage into the house (in a 350 pound power wheelchair, even that one step is a total non-starter). Or even if he gets in, the doorways may be just a smidge too narrow in older homes. Or in the unusual case that there are no outside or passage barriers, the family room hangout zone with the big screen TV and pool table is in the basement. Or there’s a sunken living room (remember the 70s). Or you have priceless Persian floor rugs and everyone takes their shoes off inside your house. Or you’re just weird and make everyone take their shoes off anyway. Wheelchairs can’t take their shoes off.
We are then faced with only a few choices and none of them are particularly appealing, although some more than others. The choices I see are listed below, followed by the reasons I dislike them.
1. Always invite everyone to our place every time – why not?! We’re friendly and love the company.
First and honestly most important to me, if I invite people over, I have to clean the house. This is not an easy task with a full time job, a disabled husband, a tornado of a kid and lots of home life responsibilities. If you aren’t a blood relative or my best friend on face of the earth, you cannot come to my house without at least a 24 hour notice. Actually, now that I think about it, people who are blind are exempted. They are welcome anytime, just mind the piles on the floor.
Also, it gets expensive to always host, even if you tell everyone to pitch in with the food and drinks (which by the way, makes you look cheap if you do it every time). Often, people suggest ordering in food to make it easier, but the host (that would be me) pays the delivery person at the door and most of the time, the chip-ins never really add up to the total. And it would make me feel really awkward to announce “more cash please.” It’s expensive to be disabled, people. I’d rather spend my extra cash on new shoes.
Furthermore, at least in my house, it can’t be spontaneous. See above about cleaning.
Lastly, we have two dogs. Allergies? Scared of dogs? Then forget it.
2. Suggest going to a restaurant. Slam dunk – every restaurant is accessible and it is easy – no cooking or cleaning!
It’s very expensive to eat out – and especially if it’s the only way you can meet up with all of your friends. Plus, to be honest, it’s a real pain in the butt sometimes because I have food allergies, so we have to deal with the chair, my food allergies and the aforementioned tornado of a kid. Ditto for movies, concerts, sporting events, etc.
And did I mention it gets expensive?
3. Demure. “Thanks so much you guys, but I have to wash my hair a week from Friday.”
I really hate having to come up with excuses not to go, because of the obvious: we actually do want to go. But I super duper don’t want to say to anyone who invites us, “We can’t come because we can’t get into your house.” Trust me, that makes the person who was kind enough to do the inviting feel like they’ve stepped in dog poo. Couple that with most people’s strong fear of not wanting to say the wrong thing to a guy in a chair, it is really a lose-lose.
But wait, there’s more. To make it better than lose-lose, we stop getting invited places. If one makes too many repeated excuses for not coming along, people eventually get the message. Unfortunately, it’s the wrong message – because we actually do want to come. We just can’t. Even if you ‘fess up and say that you want to come, but you can’t, you have to be not invited to non-accessible places. But once you stop getting invited to just the non-accessible places, it’s easy to forget being invited to accessible places as well. Out of sight can unfortunately become out of mind, even if completely unintentionally.
4. Meet at the local library – it’s accessible and has meeting rooms.
5. Only have disabled friends.
This is a fairly limiting restriction. (But obviously, we are thankful that not many people have had the life experience of mobility impairment). But with this option, you can at least swap funny ‘The Most Egregious Way I Fell Out Of My Wheelchair” stories. That’s a win for this option – trust me, every wheeler has a good one of those stories.
Social isolation due to being a wheelchair user is very real. So, yes, please do invite us. Just remember our limitations and impact on us, keeping in mind the options above and their various ramifications.
Better yet – consider buying or building an accessible home, support universal design homes. Don’t dismiss it as just an expensive thing you don’t really need when you consider home improvement, or when buying your next home. You never know when Grandma will move in – or when you will need those accessible features yourself due to age, injury or both. Or when you will have a disabled friend.
I am really looking forward to the coming years when baby-boomers and beyond will demand that homes be routinely built with no barrier, no step entrances, wide doorways, grab-bars and other accessible features.
If I ever go to a home with an elevator, I’m going to drop to my knees and praise the gods of mechanical levitation (warning, we also may move in with you).
But until someone outlaws fancy Persian rugs, dirty wheelchair wheels will always remain an issue.
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