Category: Let's talk
Everybody's got 'em; both ass holes and opinions, but there's just one problem: What does one do with all those opinions, especially when you don't agree with any of them and feel alone in your own opinion of what's right for your particular needs and situation? I am a very open-minded person, and like to think that people are all inherently good, to a point. I also like to think that most people have good intentions. But where does one draw the line when accepting advice and opinions from others whom you assume have your best interest at heart? I am a wife and mother; I'm 23 years old and I have two disabilities- blindness and cerebral palsy. We have an 18-month-old son and a baby girl on the way, due in September. I have my challenges and I face them head-on. My husband and I are both blind, however my husband does have some residual light-and-shadow perception in his left eye. We are the best of friends and we pride ourselves in our gifts and abilities as leaders of our growing family and household. We currently live in a rural town where there is virtually no paratransit system and one very inaccessible bus system. There are no cabs in the general area; you would have to pay upwards of $20 or more for a one-way ride just to get to a doctor appointment or shopping. The only department store for at least 40 miles is Walmart. Our only means of getting our family somewhere in a timely, inexpensive fashion is to rely on family and friends; and they are few and far between, let me just say. Our primary reason in moving here from the BayArea was to be closer to my adoptive mom and her support network. She has since passed away from cancer and we are estranged from the majority of her family, which is for the better I must say. We are relocating to what we perceive as a better area transportation and resource-wise for our family. Since we've made the decision to live away from our little rural desert town, to a more heavily populated desert town- (no, we really don't care much for the hot sun and wind), we have been faced with some rather discouraging and sometimes even hostile responses. It all started when we told some friends of ours in Los Angeles that we couldn't live there because of how expensive it was. After a rather heated argument and some harsh words were thrown around, we were told "don't ask for anymore help. Don't bother calling here or coming here to see us." Their particular concern with us moving to the lower desert was that we would not have support from my husband's family and friends (who, by the way, rarely have anything to do with us, even when we've gone to visit and invited them to see us.) Ok, so you lose some friends, you gain some friends; that's just life. Now, because we are moving an hour away from my aunt and uncle, we have gotten nothing but discouragement and negativity from them all the way around. I've heard comments from them such as "How are the medical professionals going to react when you tell them that you have no family support?" "You could've asked someone to take you to more church activities so you could get to know more people." "It's going to be more expensive living in the city." "You will have two kids; do you honestly think you will being traveling with two kids?" These are things I have thought about; what to say when asked about lack of family support, namely. But honestly, I am trying extremely hard not to think that living in a more densely populated area with better transportation and more opportunities is going to be the perfect situation. Granted, some things will still be there; the resentment of not having much family to begin with, the feeling of utter isolation that sometimes accompanies life as a disabled stay-at-home mom with a soon to be newborn and an active toddler; some things will still be hard, however, other things will get easier.
Here are some questions I'd like us all to consider:
1. As individuals with disabilities, do you think that having "support" is hindering or helpful?
2. Does having a "decent" transportation system really give you more options and opportunities versus relying on a few people that can only be around so much to drive you places?
3. As far as the professionals go, what advice can you give on ways to appease their possible concerns about our family's well-being?
4. Which support system would you choose; family or friends/members of a church or group?
5. Do you agree that relying on family and friends to drive you places is different than paratransit/bus systems? How is it different?
6. What do you think of the "advice" that we have received in regards to where we are moving?
I'd really love to hear your take on all this. I realize that maybe I've not given enough information about some things, so if you need more information in order to help you get an idea of our situation, feel free to ask for it. Thanks in advance for your understanding and consideration.
I live in a city without the support of Family, I've done it for 16 years now, and often find people are shocked by it. I don't have a partner, or children, so obviously don't face a lot of the challenges you do, however my family constantly ask me to move closer to them, and are always trying to give me advice which they believe is the best for me, and then irritated when I don't take it. I try to point out to them, that while I always listen, and consider their advice, I have to live my life, because one day if life progresses the way it's meant to, they won't be here to support me, and so have to do what I can to be independant, while they're still here for me to fall back on as a last resort. I think it hurts them, that they believe I should need it all the time, yet rarely ask.
I know that doesn't answer your questions, but it does give you another possible way to make them feel a little better about the things you do. They have their life, and could come to resent you if you relied on them all the time for things. I'm not one for church so can't advise on that, but do have a small group of sighted friends who will support me and sometimes drop what they're doing to help. I find that only works if you don't ask all the time, they then realise that you only ask when you really need to.
best of luck with everything you choose to do, as long as you've thought it through, and you do your utmost for your amily, the only way people will be satisfied is when they see your family come to no harm in spite of any disibilities you have.
Have you guys looked at the transit system in the town you]re moving to, have you checked if there is any sort of special transportation system as well? Have you considered looking on places like Craigslist for someone who could do occasional errands and/or driving for you (special appointments etc)? There's a lot of unemployment around, so people with cars could be available for very reasonable rates, cheaper than taxi and much quicker since you can have sighted assistance.
In order of preference for me, in terms of setting something up and running errands I'd say, public transportation, a person being paid by me to run errands, family, friends. I have bad experiences mixing up friendship and money or duties, I want my friends to be friends, not to make them feel I only use them to makemy lie easier, if they ofer, of course, that's cool, from time to time, but not much beyond that.
You can also only use public transportation if you find a place that has easy access to it, no use if the bus stops across a major highway from your house sort of thing, so it takes considerable scouting until you find something that works, usually.
I think, generally, it's good to involve the family as much as possible, have them help you find a place if they're concerned about your safety or well being, make them a part of your idea and accept their input and opinions, they tend to see things you don't, but that's only if the family is close and cares enough truly. You must also be able to take the advice and discuss it, from your posts I wonder if you may be get overly defensive right away and it may put off those who are trying to help (it's just an impression I get and it may very easily be wrong).
I lived by myself thousands of miles from family for 5 years (plus college) and with a combination of very careful search for a place to live, with perfect access to public transport, about $60 a week for 3 to 4 hours of assistance from someone I found on Craigslist, occasion special transportation services and occasional help from friends and buddies I had a pretty easy and comfortable life. Kids complicate t hugely of course, it's, for instance, very hard to take a todler on a bus, at least in the beginning, you'd have to use backpac or stroller and they're going to be wanting to run around and probably not happy being confined, but I'd imagine they'd get used to it pretty quick.
If you organize these concerns and find a place you can use that to appease any professional concerns over your living arrangement, if you can justify it easily and precisely why you did what you did and how it works for you.
And, hey, Wal-Mart is a great department store, you could do worse, no one is cheaper for groceries and their quality is a heck of a lot better than I ever expected, we got one across from the housepractically and their bakery is top knotch, their fruit and vegies great, their steaks leave a lot to be deisred, but they can be gotten elsewhere, not like one needs to eat them daily, nor even weekly.
Good luck
-B
I prefer to stay in the city. even though I got my family around, I love to be independent. as per our situation, being as a totally blind, I feel residing in a city with good transportations is ever good for us.
as per depending someone, that differs. for me, sometimes, my office colleagues will help and other sometimes, my family too. but I normally will pay back them by some other kind. for an example, if some of my friends is picking me to my work, I'll give the fuel cost for them. even if I'm depending some of my friends for formatting my pc, I'll make them happier with few beers? or whatever they prefer.
so as per depending someone, that has to be in your own choice. In short, whichever floats your boat.
Raaj.
I find also that people are shocked that I live 3000 miles away from family. I live in a city where there's some paratransit service. I have hired an assistant to help me out twice a week for four hours with shopping and such since paratransit doesn't go all of the places I need to go like the bx and commissary on base. As far as medical people, I would just tell them that you are very capable of handling things on your own and that disabled people are just as normal as nondisabled people. We just do things in different ways.
As to the advice-giving, something I used to tell my wife when we first started out:
- They're not responsible for what we do, we are. And people with or without disabilities have the same advice problem both giving and receiving, but I think it's exacerbated when you're first starting out on something, since you're trying to decide to whom you should listen.
Here's your questions and my food for thought, but ultimately yours to decide:
1. As individuals with disabilities, do you think that having "support" is hindering or helpful?
Symbiotic support is helpful; nobody is truly independent. But resentment is a warning, not only to the resented but to the resenter. I think being blind you have to watch this carefully, as even in the best of circumstances, well-meaning folks with no experience may try to overextend themselves in support, and may resent you for holding them back, but it really is for their own good; they don't know when to stop. There's always something you do which they don't, or would rather not, and you can make their lives easier. Like Raaj, I tend to also offer beers, a cigar, or whatever they may want. But you gottam make it symbiotic, and pay for it on Craigslist if nothing else. Better to have someone paid assist with any personal affairs, as you're hiring them and they'll keep opinion to themselves.
2. Does having a "decent" transportation system really give you more options and opportunities versus relying on a few people that can only be around so much to drive you places?
Absolutely! First, you go when you can / need to, and having toddlers this is important. Second, just because someone is able to drive, and maybe even wants to, doesn't mean they can, or even should. Are they prepared to allow you - with no polite refusals - to pick up the tab for gas and repair or "wear and tear" costs? People in churches and other community-based groups tend to think they can't or shouldn't ask. You don't want to be someone's good deed ...
Also, will that driver be totally honest if they just can't do it? And I mean before they become resentful of you? In many instances, this is doubtful, but yu are the one in control and you have to look out for the situation. I personally do things in trade or outright pay for them. Obviously, as friends, peple do stuff for one another all the time, but you have to watch the line. Public Transit rules especially if your husband does not work at home. I am fortunate in this way now, but it took years to work up to it.
Also, for stores / deliveries, look at your new area for "store to door" deliveries, as you can nearly offset cab-based transport costs by buying over the Internet through your local grocer.
Those new eco-friendly shopping bags are really great for carrying things, and I also have a foldable shopping cart I used in the city. There's a store a mile or so from here in the suburbs, I won't hesitate to use it there either. Being blind, I just tip it on its back wheels and pull it with one hand behind me while using the cane with the other. I realize you have CP - don't really know what limitations that imposes, but perhaps your husband could do that. They can become unwieldy.
3. As far as the professionals go, what advice can you give on ways to appease their possible concerns about our family's well-being?
Which professionals and what advice? And what I mean is, as a computer professional I give advice on computers. But when someone starts asking, "Oh, say, what about my car stereo ...", well, I can't answer that as a professional.
If they try to be the professional expert outside their area of expertise, they cease to be professional, and cease to be genuine. Doesn't mean they can't have an opinion, but frankly, it sounds like you gotta learn to consider the source. Who said it, what do they know, and on what basis are they saying it? And also, to be quaint yet again another cliché: If the shoe fits, put it on! My mom used to tell us boys that, or rather yell it on occasion.
4. Which support system would you choose; family or friends/members of a church or group?
Responses to Question 2. Whichever is most symbiotic; you must be supporting them as well as they supporting you. Your greatest resourcefulness must come from within.
5. Do you agree that relying on family and friends to drive you places is different than paratransit/bus systems? How is it different?
Obviously. You are not 'relying' on paid transit of any kind, because you are hiring or buying it. It is an indifferent machine that any number of masses of humanity uses. Contrast that to the reliance on a few individuals, who aside from all of their own responsibilities, would add onto that taking you places. You will need to take some of the work from their shoulders in order to compensate. Lack of freedom of movement makes you feel like a prisoner. Nothing is ever free, and the price you usually pay is in the advice, opinion, or overbearing treatment you just described. I do believe a bus or train ticket is far cheaper. And with use of paid transport, that includes car pooling to work in my opinion, you are free from the responsibility of residual affects on the unpaid driver. You know far more than they do what effects unpaid work will have -- on them -- whether they realize it on the outset or not. One of many reasons human slavery was outlawed in the civilized world.
6. What do you think of the "advice" that we have received in regards to where we are moving?
This is only opinion:
If you do move, you will fend for yourselves and some people who have seen you since you were a child will have to stop thinking of you that way. My father told me the same thing about his two years in the armed service overseas.
As to their advice, consider the source. And consider this: do they tend to give advice before they know the whole situation? Do they start to advise before you've finished explaining? Then you know what purpose that advice serves; it's dispensed or ejaculated to make themselves feel good. That's it.
One final thing:
I don't believe your quandery at its source relates to your disabilities. Being the parent of a teenage daughter myself, I see this peer pressure stuff going on all the time. And what you're dealing with is in fact peer pressure on steroids! The adult version! It only solidifies my resolve to teach her to think things through, and consider the source. Churches and other groups tend to substitute for junior high friends in adults I think. You hear people say "Well, they say ..."
They're not responsible for what happens, you are.
Just take control. You're just starting out so things will naturally be bumpy. In some ways more so on account of disabilities, but for the most part, they're bumpy anyway in the early stages, you getting fairly little sleep and chasing your toddler around all day, you and / or your husband just starting out on a career.
To Answer A Few Questions:
We are moving to an area with a paratransit system that runs from 4 AM to 12 midnight; the bus stop close by, a few stores such as Target Marshalls and the mall are within close range as well. I believe there's even a few restaurants around, too. We currently live in an area where there is only a standard Wal Mart, unlike the Super Wal Mart, and it is extremely understocked and over-used as it is the only department store for an hour around. The is a grocery store near us right now, and for small items like bread and milk and something for dinner, it is useful for my husband to use a hand-cart or the bottom of our son's stroller.