One of the problems with support networks is that the people in them have their own priorities. Now, that’s not anything against them – every person has different priorities from the person standing next to them. Even if you take a couple in an incredibly close relationship, they’re going to put different value on things. That’s the nature of human beings.
The trouble creeps in when the priorities downright clash.
Right now, I’m not supposed to be walking much at all. Not until I get my new knee brace, which should be the middle of next month. It’s inconvenient. It means that I have to use my scooter everywhere, and that’s a bit difficult. You see, I live in a house with 3 steps up to get in the front door. So I can’t just wheel my scooter out the door. Also, I don’t have a trailer or hitch-mounted carrier for my scooter, so to take it places, it has to be broken up and put in the trunk, then hefted out and re-assembled. The scooter breaks down, sure…but even broken down, there’s a 50-lb piece, which is far more than I can heft without hurting myself.
Now, typically, the boyfriend does all hefting of the scooter, and drops me off places. However, the boyfriend’s uncle just died yesterday, and he’ll be driving a couple hundred miles to his family for the funeral. He’ll be gone from Tuesday until the weekend, most likely.
I’ve called friends, and no one is available. I thought I was in big trouble. I really can’t get around without my scooter!
I lucked out this time – my neighbor is willing to give me a hand. We built a ramp a while ago, but it’s too heavy for me to move. My neighbor will put the ramp into position so I can wheel on out. I’ll use public transportation (which includes a longer ‘walk’ than I can do even when my knee isn’t busted, but I’ll be on wheels!). When I get home, my aide will put the ramp back out at night so I can come in (or she’ll break down the scooter and carry it in piece by piece – that may be easier for her, because she’s a small woman and the ramp is 8′ long).
It’s scary, though, when you need help and you go through your support network and NO ONE can help. It’s frustrating! Part of the problem is that when you have a major disability or a chronic illness, your support network is often thin because of the sidelining affect that ablism has on you and, well, we’re often less able to go out and socialize. So you end up leaning on everyone harder than you should. You find yourself begging favors of the same handful of people over and over and over, and you can only hope that you don’t burn them out.
And when you burn out one of the few people who helps you, man are you ever in trouble. So far, thankfully, I’ve been able to avoid asking the same people for favors more than a few times each (with the exception of the boyfriend, who kinda does everything), so I’ve preserved my social network as best I can. That looming threat always worries me, though…the thought of ‘what would you do if one of these people stopped helping?’
One can only hope it never happens.
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kali, I would ask you to bear in mind that you have charted an awfully aggressive course for yourself considering all the roadblocks you must face.
One strategy may be to structure in some “slack” so that when your boyfriend has to attend a funeral, you are allowed to miss work, etc.
Another strategy may be paid help (taxi, anyone?) for times when your support network are not available.
Also I ask you to consider what your support network gets back from you. Is your input (favors, advice, emotional support) equal to your outtake?
Unfortunately, this semester is one where I haven’t got much slack. I’ve got one class a week I can get away with missing, one class I cannot, and 3 days a week of doing clinical work.
Paid help usually works, but with the boyfriend not working, we’re relying entirely on my student loans to support 2 people, and it’s a bit of a pinch.
I try to make what I give equal to what I take. I tend to do mostly emotional support, and then once or twice a year, I make a really nice dinner for the people who help me out. I unfortunately am rarely in a position to do favors for the handful of people who I can count on for support; most of them are recent law school grads who don’t have jobs yet due to the economy, and I don’t exactly have strings to pull for that sort of stuff.
I can absolutely relate to this. In fact, it is one of the reasons I won’t live togetheer with my boyfriend for at least several years: tooo much of my care would come down on him. The consequence is living in an institution with professional support, but I choose that over having to risk my home and my relationship, let alone again my mental stability, if I take the risk of living with the boyfriend. It’s a tough choice though.
It does scare me a little how much I’ve come to rely on the boyfriend. Especially on his strength for things like…building a ramp for my scooter. Moving the scooter around. Breaking the scooter down and putting it in the car. Carrying groceries. The list is so very long.
I’m lucky that for a person with bipolar, I’m relatively stable even without meds. With meds, I just have to deal with the occasional panic attack from my PTSD – it’s been quite a while since I had one. On the wrong medications, though, I actually end up more unstable than I am unmedicated. The worst depression of my life was caused by a medication.
Burnout is a big problem, as is the limits of the support network, for us as well. While my husband and I do most of what the boys need, we also end up leaning on the same few people to fill in the gaps. For us, it’s my mostly my mother and my husband’s parents. My mother does most of the hands on stuff–including a weekly respite schedule with very little time-off (for which she gets paid, but not enough to replace her full-time job). While my in-laws help mostly with the major financial gaps.
In our area, however, there are programs that try to connect people to support providers. Some of these programs are exclusive–for example, Wisconsin has an autism waiver that provides funding for services like respite and therapy. Other programs are inclusive–for example, there’s an organization that provides respite funds for families with children that experience a variety of disabilities. Connecting with these resources, which often requires contacting the county disability organization (the name varies depending on the state and county), can help increase the support network available. But again, this is in the US, and support services tend to focus on children with disabilities and their families–presumably because parents’ advocacy efforts are more effective (which is another example of ableism).
One strategy I’ve found that helps is trying to keep a list of people who have expressed a willingness to help. I’m not very good at maintaining such a list, but even a little effort in this regard has kept me from always relying on the same small circle. We have friends and family that go beyond those who we most rely on, but we tend not to think of them until someone else in our network cannot do something. By making a point of having a list and utilizing it, you can reduce the liklihood that one or more of the people more eager to help will be burnt out.
I wish I had a bigger network to rely on.
Both my family and the boyfriend’s family are not local – his family 6 hours drive away, my family on the opposite coast. I’ve really struggled with making friends in law school – it’s got the social dynamics of high school, and being the odd kid once again doesn’t help matters any. I only managed to make 2 friends my first year of law school, and most of the rest of my section (where most friendships are made) decided I was an excuse rather than a person because of all the trouble I had that year. Since then, well…like I said, most people make their friends the first year, so it’s harder to form relationships after that. I’ve tried. I end up with people who like to stop and talk with me while we’re in the same class, but with whom I never do anything outside of school, and we drift apart almost immediately after the semester ends. I don’t have the wherewithal to do much outside of class unless it’s in my home, and people have declined to come meet me there. I’ve also tried suggesting grabbing lunch together, and it’s always declined.
It’s been very, very frustrating. I’d like a wider network of people who are friends just for having more friends, much less for having more people to rely on, but so far that hasn’t gone well. Before I met the boyfriend, things were bad enough that I had a friend who was originally local to here (he now lives in Europe) open his support network to me because he was worried about me, but it was definitely something where I felt like I could only borrow each person once or twice.
I had similar experiences in my college classes. There were a few people I would re-connect with if we had the same classes again, but that was it. There was only one person that I made a point of seeing and talking with at the graduation ceremony. I haven’t spoken to anyone I went to college with since then. So I can certainly understand how inadequate relying on traditional social networks can be.
At the same time, I wonder how much the physical vs. behavior would factor there. For myself and my boys, physical differences are minor and not very noticeable. Most people don’t pick up on our differences in making eye contact or that the way we react to various touches is different. Whereas a physical disability creates an immediate impression. I can read the words you write and I can identify with them, but I expect the realities to be a bit different. It generally takes time for people to dislike me because of my differences–people notice I’m smart and say interesting things, and they like that, and only start disliking me when I miss important social cues. Yet, I’ve seen people avoid others in wheelchairs or with physical disabilities based only on that first impression.
The resulting isolation is much the same. The importance of accepting and accommodating differences is the same. But how to bridge the gap may be very different. Honestly, I don’t understand why people avoid other people based on visible, physical disabilities. I understand the mechanisms that are described–prejudice, discomfort with disability issues, first impressions–, but at the same time it makes no sense to me. I would think the well-educated bunch at a law school would know enough to not make such a mistake, but clearly they don’t–and I just don’t get that.
Perhaps a church or a volunteer group would be a better way to connect with people who are willing and able to see you first and foremost as a person. That could be a way to expand your social network and, in time, your support network. But not really understanding why people would exclude you in the first place, it’s difficult for me to speculate how to overcome that.
You are absolute right. Support networks are hard to maintain and the folks in them get burnout quickly. Unfortunately, I think they are necessary evil. No, evil is not the right word. They are a necessary aggravation.
I have found dealing with the people I have to include in my life due to the disability about as much work as the disability itself.
Be well.