Like most people with ME, my social life took a big hit when I got ill. By the time I get home from work most days, I definitely don't have the energy to do stuff with friends. I still do manage to see friends sometimes though and I'm incredibly lucky to have a group of friends who do everything they can to make the stuff we do as easy on my body as possible.
I figured it might be helpful if I made a list of things that you can do to help include your ill/disabled friends in social activities. The list is probably particularly relevant for people who have illnesses like mine, but I think it would also work for people who struggle with any number of other disabilities. If you're ill/disabled yourself and you think this list would be helpful to pass along to your friends, you're very welcome to do that!
Here we go:
1. Understand that any plans we make our provisional. If we cancel at the last minute it's really not because we don't want to come; it's just that we can't today.
2. Getting places is often hard for us. For those of us who are wheelchair users, access can be a big struggle. Ask us what we need in terms of access and if it all possible try to plan events in venues that we can get to and get into. (That means thinking about things like: how close is it to the nearest parking area, are there stairs on the way in or inside, is it near a bus/train stop, is there disabled toilet, etc.)
3. By far, the most helpful thing for me in social situations is knowing that there is a place where I can go and rest if I need to. So, whenever we have things at my house, I make sure that there is a bedroom where I can go and lie down if I need a break. I think that should be a totally standard thing at parties! Providing a quiet place where people can go and rest and not be bothered by other people would help people with all kinds of disabilities-- and people who just want to get away from everyone else for a little bit ;-)
4. Make sure we have a place to sit that works for our bodies. Any party where everyone is going to be standing up and I can't count on there being chairs is a no go for me unless I go in my wheelchair. For a lot of people with pain conditions, a particular kind of chair is useful. I have a friend who finds that a beanbag it is one of the few places he can sit for any length of time. Inviting him to bring the beanbag to a party would mean that he's able to be there in less pain. Or, if I go out with him to a café and there are a couple different kinds of chairs, I'll simply ask him which one would be best for him. We know our bodies and what works for us and what doesn't, so just ask.
5. If where we can sit is limited (for example the wheelchair space in a cinema), please sit with us. Nothing sucks more than spending your precious energy to go out to do something with the group of friends and then ended up having to sit away from them or being shuffled off into some corner while everyone else enjoys being part of the group.
6. Keep inviting us. We probably say no to a lot of invitations, but please don't let that make you think we would rather not be invited in the first place. It's nice just to know that you still want us to come along. And on the occasional day when we can do something, it's great to be able to take up the invitation.
7. Let us know, in detail, what the plan is. Everything I do has to planed quite carefully and my physical impairments usually don't leave a lot of room for flexibility. If I know ahead of time what exactly we're going to be doing and what it will require of my body, I can plan around that. For example, if I know we are going to be moving from one place to another, I can plan how I am going to get there. Consulting us about changes to the plan is also important. Parking somewhere and then deciding to walk a couple of blocks to a different restaurant because the first one was crowded really isn't doable for me. If the plan has to change, just be sure to ask your ill/disabled friend what they need to be able to go along with the change.
8. Know that there may be some really frustrating obstacles. A little while ago, I was planning to go to a party at a friend's house which is a little way out of town. I was going in my electric wheelchair and another woman who was coming is also a wheelchair user. We live very close by and the buses going from our area town to where the party was only went about every half hour. Since the buses can only hold one wheelchair to time, that meant that we actually had to discuss who was going when if we both wanted to take the bus. Even then, if we each agreed on a bus time and the bus was just too full, if the ramp was broken or if there were too many buggies that wouldn't get out of the way (it happens, trust me), the whole plan would've been off. Get frustrated with us when shit like this happens, but please don't make us feel like we're the inconvenience.
Any other thoughts? What do your friends and family to to help ensure you can be included in activities?
I figured it might be helpful if I made a list of things that you can do to help include your ill/disabled friends in social activities. The list is probably particularly relevant for people who have illnesses like mine, but I think it would also work for people who struggle with any number of other disabilities. If you're ill/disabled yourself and you think this list would be helpful to pass along to your friends, you're very welcome to do that!
Here we go:
1. Understand that any plans we make our provisional. If we cancel at the last minute it's really not because we don't want to come; it's just that we can't today.
2. Getting places is often hard for us. For those of us who are wheelchair users, access can be a big struggle. Ask us what we need in terms of access and if it all possible try to plan events in venues that we can get to and get into. (That means thinking about things like: how close is it to the nearest parking area, are there stairs on the way in or inside, is it near a bus/train stop, is there disabled toilet, etc.)
3. By far, the most helpful thing for me in social situations is knowing that there is a place where I can go and rest if I need to. So, whenever we have things at my house, I make sure that there is a bedroom where I can go and lie down if I need a break. I think that should be a totally standard thing at parties! Providing a quiet place where people can go and rest and not be bothered by other people would help people with all kinds of disabilities-- and people who just want to get away from everyone else for a little bit ;-)
4. Make sure we have a place to sit that works for our bodies. Any party where everyone is going to be standing up and I can't count on there being chairs is a no go for me unless I go in my wheelchair. For a lot of people with pain conditions, a particular kind of chair is useful. I have a friend who finds that a beanbag it is one of the few places he can sit for any length of time. Inviting him to bring the beanbag to a party would mean that he's able to be there in less pain. Or, if I go out with him to a café and there are a couple different kinds of chairs, I'll simply ask him which one would be best for him. We know our bodies and what works for us and what doesn't, so just ask.
5. If where we can sit is limited (for example the wheelchair space in a cinema), please sit with us. Nothing sucks more than spending your precious energy to go out to do something with the group of friends and then ended up having to sit away from them or being shuffled off into some corner while everyone else enjoys being part of the group.
6. Keep inviting us. We probably say no to a lot of invitations, but please don't let that make you think we would rather not be invited in the first place. It's nice just to know that you still want us to come along. And on the occasional day when we can do something, it's great to be able to take up the invitation.
7. Let us know, in detail, what the plan is. Everything I do has to planed quite carefully and my physical impairments usually don't leave a lot of room for flexibility. If I know ahead of time what exactly we're going to be doing and what it will require of my body, I can plan around that. For example, if I know we are going to be moving from one place to another, I can plan how I am going to get there. Consulting us about changes to the plan is also important. Parking somewhere and then deciding to walk a couple of blocks to a different restaurant because the first one was crowded really isn't doable for me. If the plan has to change, just be sure to ask your ill/disabled friend what they need to be able to go along with the change.
8. Know that there may be some really frustrating obstacles. A little while ago, I was planning to go to a party at a friend's house which is a little way out of town. I was going in my electric wheelchair and another woman who was coming is also a wheelchair user. We live very close by and the buses going from our area town to where the party was only went about every half hour. Since the buses can only hold one wheelchair to time, that meant that we actually had to discuss who was going when if we both wanted to take the bus. Even then, if we each agreed on a bus time and the bus was just too full, if the ramp was broken or if there were too many buggies that wouldn't get out of the way (it happens, trust me), the whole plan would've been off. Get frustrated with us when shit like this happens, but please don't make us feel like we're the inconvenience.
Any other thoughts? What do your friends and family to to help ensure you can be included in activities?
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