Sunday, December 14, 2008

No, an Encore

In response to my post from yesterday Night Owl responded with quite an emotional comment. If you remember, I had written about the power of 'no' and about teaching people with disabilities to say 'no' even when, as people with disabilities we live in a world where other people's 'nos' often count for more. (An award for you if you followed that sentence right the way through.) Night Owl then responded by talking about how her sister, who has a disability has all the power - and is given that power by how she use's her disability. After you read what she said, I'm going to take the opportunity to respond:

But my sister is completely addicted to power and she has every single person in our house under her complete control. And while I'd like to say this doesn't matter, we are all older than her. I'm not saying that the older you are, the more power you should get though. Just, if it was equal, it would be nice, you know?

If she says no, that's what goes. If she says yes, that's what goes. No one else has an opinion. No one else has any say.

Like, I was drawing the other day, and she saw me. But then she suddenly had this need to see all of the sketches in my drawing book, and some of them are very personal! Plus, I was busy drawing! So of course I tried saying "maybe later because I'm drawing now". But she just grabbed it and ripped some of the pages. It's like I didn't even have a choice, even though it was my sketchbook, and my sketches, not hers. :(

It just does not seem fair that she has all of this power. I feel like I can't even live. I can't do things I like because she might see me and for example, then I would have to go through the violation of her looking through my private stuff... I understand that she has a disability, and so we have to be nice to her. But still, I need some things to be my own and not hers. :(

I feel like a really bad sister for saying this and feeling this way. :(

Night Owl, let's get what's really important out of the way first. You are not a 'bad sister' for having honest reactions to the behaviour of others. In fact your reactions are precisely because something is seriously out of whack and your instincts are telling you that things need to be changed.

Many years ago I did a workshop for couples with disabilities and one man said, 'As soon as they call you disabled they start taking things away from you ....' One of the first and most precious things taken away from people with disabilities are expectations, obligations and responsibility. The theft of these from children with disabilities has done incredible harm, particularly to those with intellectual disabilities.

Just because there is no expecation of learning does not mean that learning doesn't happen. You sister, forgive me, sounds like a spoiled brat, a behavioural tyrant and someone who needs to learn some discipline. I have often commented in my workshops to both parents and staff that we are raising a generation of spoiled brats who have few demands and fewer expectations. I fear that individuals with disabilities who do not learn some basic skills in relating during their formative years are destined to live lives of utter loneliness.

Friendship is a skill.

Do you know what research says is the most important social skill for the maintenance of relationships? Reciprocity. The ability to give and take, the ability to concern one's self with another's needs, the ability to suppress what one wants in respect for what another wishes. This is a highly complex skill that is so easy to teach. Without this skill - the likelihood of having friendships drops to almost zero, the likelihood of being loved disappears. Hell, the likelihood that any PAID careprovider will provide with care is startlingly diminished.

I often have people say that someone in their care doesn't need to come to a workshop on the word 'no' because they use it all the time, because they already control everything or because they can say 'no' but can't hear 'no'. I am saddened by these remarks. Firstly, my workshops are about preventing abuse - and abuse can happen to anyone with a disability no matter their temperment or temper. Secondly, these are precisely the people who don't know how to say 'no' ... using 'no' all the time demonstrates the inability to discriminate, being the person constantly in control demonstrates a complete lack of reciprocity and not being able to hear 'no' places the person in a position of vulnerability and danger.

Night Owl, I hope you don't mind that I pulled your comment out to respond to in a blog all by itself but I felt that I had to, your emotions were quite raw and entirely honest. I didn't find your attitude unkind or your concerns immature. But now I go further and want to respond to a single line of what you said:

I understand that she has a disability, and so we have to be nice to her.

Um, yes and no. Disability can take a bit more understanding, true. But what would be nice is if your sister was given the respect of expectations to relate as a mature adult. She needs to learn, or in this case unlearn, many things. You are her sister, she needs to respect you and your boundaries, she needs to learn to show you love and care as much as she expects you to show love and care. She needs to learn to be an equal part of a family - she doesn't always get the larger slice of pie.

So please, for the health of your family and the future of your sister. Sit down and talk, all together about how you all need to change to relate better and more positively with one another. Ensure that your voice is heard. And if other's won't respond with raised expectations ... then raise them yourself between you and your sister. This means that there will be lots of sparks and tears of frustration. But out of those tears will come learning, and out of that learning will come ... perhaps ... someone a little more loveable.


FridaWrites said...

I am a twin. My sister did not have a physical disability growing up, but I at times did. She was very jealous of the attention and felt I had everything because of it, while I felt everything had been taken away. My freedoms, my right to my personal bodily autonomy, my space away from family. But the extra attention and caregiving was required--because I was completely physically dependent--bothered her a lot. It was not something that was my choice. I would have chosen quite differently and my heart was at times broken; I would have far rather continued ballet lessons than medical appointments.

Everyone does deserve personal space, and people feel better about themselves both when they're respecting others and when they're respected in turn.

But the idea that we should just be nice to someone because they're disabled bothers me, maybe because I heard it in my own family and other situations, often bullying kinds of situations. I do think we should be nice to everyone, and it in someways implies that we're not everyone, that we're somehow apart rather than to be included with the group.

Night Owl, you use the word "power" a lot, and this in particular concerns me. A perception of a lack of power can actually lead to abuse of power. You're young so I'm trying to be gentle as possible, but it's important for me to say this. You're justifying saying "no" just to say "no" to someone disabled because you perceive they have something you don't--not because that "no" is just.

Saying no to draw boundaries or for safety, that is just, but just for power, that further takes away someone's independence. That's the real disability, when someone takes our independence from us. When I couldn't get a wheelchair, when Dave's was lost, when we can't get into buildings, when someone yells at us for simply existing--that's what disables us more than anything else. The greatest freedoms lost are the ones people take from us more than the ones we lost through physical or mental disability.

And Dave lost the freedom to eat breakfast with Joe. His power was taken, by someone who could, by someone who probably did not even perceive it as such, by someone who thought disabled people always "get more," because he required additional assistance for the plane. Instead, he gets less. No breakfast, no shortbread, just because he uses a wheelchair.

But here, and in his workshops, he takes a lot of that "power" back--not taking others', just retaining his own.

FridaWrites said...

I guess what I'm trying to say is that we don't know that her sister is the one who's in control, with all the power. It can be a matter of perception. Disability can leave everyone feeling disempowered.

Night Owl, I am glad you are addressing these ideas--you've brought up a lot about family dynamics that I really haven't seen discussed directly before (in my limited experience in this regard).

Dave Hingsburger said...

FridaWrites, thanks for your input here. I always hoped that Chewing the Fat would lead to discussion on topics of importance. You looked at NightOwl's comment from a different, and welcome, perspective. I truly hope others join in this discussion.

rickismom said...

I hopped over to her blog (not now, after reading her post this morning (her it is afternoon already). I was very concerned.

I think, night owl, that Dave and Freida are saying very important things. I know that I was under the power of someone for years before I learned to value myself and raise my voice. It can be learned.

Night Owl said...

Dear Dave,
First of all, thank you SO MUCH. I am so honoured that you've made a blog for me. I'm sure that there are others out there who will also benefit, too. But thank you so so so so much.
I really need help. I just don't know what to do anymore.
And you are exactly right - she doesn't have the skill of friendship. She has no friends at school. Apparently she hangs around younger kids at recess (and probably bosses them around). This is a problem though, especially as she is going to high school next year (and there won't be anyone younger than her there).
I really want to be a better sister. My parents are always mad at me for not being "nice to her" - for them, this means "just give her what she wants for goodness sake so she won't break things and scream and hurt people!".
She is definitely a bully. She even hurts my parents. But I guess that's fair, as they hurt her too.
I hate this stupid cycle of violence. It feels like there's no escape from it.
It's just been so long that I'm worried maybe it's just not possible to "fix it" anymore. :(
I know I can't fix it alone. Other people in my family have to be with me on this. And they aren't. They wouldn't be. They hate getting help, because they seem to think they can do everything themselves. And if we sat down and talked about this, it would be without be sister (which is just about the stupid-est thing I've ever heard of, right?). And my brother and I would get all the blame. I think it's just easier for my parents to be angry with my brother and I, because they can't get angry with my sister without her doing something extreme. And if we sit down and talk, the four of us, it's basically just my parents lecturing my brother and I on what we're doing wrong. You can see why I'd prefer to avoid this, right?
But even though it will be a small contribution, I will try everything in my control to be a better sister and make my relationship with my sister healthier. I just don't think I have much control over this situation, so I'm not even sure I can do anything... :(
I truly wish though, that we could get someone to come and help us. :(
And, by the way, she ALWAYS gets the LARGEST piece of pie. (Literally.)
Thanks again,
Night Owl

Night Owl said...

P.S. And regarding being jealous of attention:
My sister will not let me show affection to my mom anymore (i.e. hugs, etc.) She gets so jealous of this that I am literally beat up for it. And she is constantly on top of my mom.
I feel like I have absolutely no one to talk to. No one ever listens to me. Because of course, guess who they are constantly busy with?
When I'm sick or having problems I'm told to "smarten up" because my sister already has a problem and that's enough. I don't need to do these stupid things for attention, because I'm not going to get it anyway.

FridaWrites said...

I'm sorry everything's been so difficult. What I learned with my family and what you're learning with yours is that a lot of openness about disability and dealing with problems very directly is truly important so that everyone feels valued, so that everyone can do as well as possible. When that directness doesn't exist, everyone suffers.

It's difficult when you're at home dealing with parents who aren't willing to address issues more directly--in this way, you're probably more mature or aware than your parents. And that can be very frustrating, to see solutions and not be able to help implement them, especially as you're a adult who should get some say in the family and who may have some caregiving responsibilities when your parents are older.

I admire that you're reading disability blogs and trying to find some answers, to understand the dynamic and how it can be improved as much as possible within the framework you have. I didn't have input growing up into any decisions that were made (school, health); definitely my sister didn't. My own philosophy toward disability (and toward my children, who don't have disability) is that everyone needs to have a certain amount of autonomy and input--parents can't forget the wisdom of their children, or their needs.

You have us to listen to you, definitely. I am. You'll be stronger for all of this and will develop a lot of creativity for dealing with difficult issues because of it.

Anonymous said...

I hope I get what I mean to say right here. I work with people who are affected by disability and it is odd how many of these individuals have siblings who live far away from their family having got out as soon as they could.

I worked with one man who had been taught all his life he had rights - and he had - but someone forgot to tell him about his responsibilities. At his funeral people chuckled about this rebel who got what he wanted all the time but they missed something, he choked to death because he refused to take the advise offered about a soft diet, the paid carer who's life was placed at risk waiting for him outside his door in the early morning because he was in the pub. He felt he had the right to stay out but to have carers waiting when he wanted to come home.

I feel it is as much an abuse as locking people away in an institution and am always telling folk I will get "rights" tattooed on one hand and "responsibilities" on the other.

little.birdy said...

I would also like to thank NightOwl for speaking up. I have a sibling with a disability as well, and I know something of the complicated dynamics that can arise between family members. I hope that your sister can be taught to seek power and attention in a more constructive way; otherwise, I fear she will not lead a very productive or happy life.

Anonymous said...

Night Owl, maybe an option for you is to have your parents read this blog and your comments. You've spoken in a very articulate manner, and it's quite possible that they are having some of the same concerns that you are.

maryanne in pgh said...

Night Owl, you are not alone in your frustrations as a sibling of someone with special needs. FridaWrites, I have to think that one of the differences between your family and Night Owl's may have to do with your last comment regarding the retention of power. Sounds to me like Night Owl's experience of being disempowered is not so different from what Dave described during his airport tribulations. (an aside to Dave: that really sucked.)
Night Owl, there are some sibling supports out there ranging from online support to formal sibling groups like Sibshops ( to published books that you can buy and share with your parents.
I may be crazy but I am fundamentally an optimist and I believe that most parents try to do the best they can with the families they have. Clearly many make significant and unintentionally damaging mistakes and it is a sadness that you feel secondary to your sister. I'm sure that you appreciate, as FridaWrites shares, that different needs require different attentions from parents. I have facilitated Sibshops and know that siblings can be very tender and sensitive to the needs of their sibs. But siblings are also deserving of support and caring and love and attention. You _do_ deserve those things, as does your brother - none of you should be sacrificed for the other - and I would encourage you to consider how you can raise this issue to your parents (if you feel safe in doing so) or another trusted person.
I don't know if it was hard for you to share what you did - I can imagine it might have been and your bravery speaks well of you.
Dave - as always thanks for this forum.

Andrea Shettle, MSW said...

Night Owl:

I'm going to ramble a lot here (I'm afraid that I'm not a very concise writer!), but I hope this might be helpful:

It sounds like you are in a very difficult situation. And it sounds like everyone in your family is losing out on a great deal. Your sister loses because she hasn't learned where the appropriate boundaries of behavior are. This means (as others have pointed out here) that she is sabotaging any chances she might otherwise have of making friends: no one wants to be friends with someone who can never learn to accept "no" for an answer.

And if she is given everything she wants right now, then this creates very unrealistic expectations that this situation will continue throughout her life. Sooner or later she will learn otherwise, and will be that much more upset when it happens. It may seem like your sister is "getting her way" now -- and in some ways maybe she is. But someone who always "gets her way" is actually still being VERY severely harmed in the process.

For you, of course, it sounds like some of your personal boundaries are being trespassed on -- and that your parents are failing to protect you from that problem. I don't draw, but I have written in a journal since I was 13 (I'm now 38). So I think I probably feel about my journal somewhat similar to the way you feel about your sketch book. I would hate for someone to just grab my journal and start reading it or tearing the pages, just because they feel like it. And would hate if I tried to protest it and was told instead to just let it happen.

And your parents are losing the chance to build a strong family relationship with both of their children that can last them a life time. It sounds like they're losing your trust. (Or am I misreading?) And eventually they may lose your sister's trust also, if she eventually realizes that they have been essentially lying to her all along (i.e., by creating the expectation that she can always have what she wants just by asking for it. This, of course, will not always be true).

When a family gets caught in an entrenched cycle of violence (whether it's purely verbal/emotional violence, or physical violence, or a combination of the two), then sometimes it can be hard to break that cycle from the inside. The involvement of an outsider (for example, a counselor who has experience working with families) can sometimes help people inside the family see different perspectives and learn new patterns of behavior.

Even if your parents refuse to get outside help -- perhaps you could investigate options for getting help for yourself? Some counseling centers sometimes offer services on a sliding scale or have other options for making their services affordable to people who don't have a lot of money.

Or, if you are hesitant to get professional support at this time, perhaps you could seek out on-line support groups for young people in family situations similar to yours? I don't necessarily mean specific to disability. Some of the difficulties you face sound like they're not directly or entirely related to your sister's disability -- for example, your feeling that you are not being heard, respected, or valued in your family.

A few more general notes to add to the above:

No, just because a person has a disability should not give them carte blanche to do whatever they want. I'm Deaf, and grew up with a hearing sister. My parents treated us pretty much the same in terms of expecting us to follow the rules, respect each other and respect each other's property (for example, if my sister said I could not borrow certain of her books or toys then my parents enforced that wish), behave appropriately in public, work hard in school, etc.

Even things that were a little harder for me to do because of my disability were not excused -- they were simply adapated a little. For example, I did learn, along with my sister, about the importance of using "indoor voices" etc ... Yes, I, the Deaf girl was asked to learn to keep my voice down in certain types of situations. Just because it was harder for me to learn when I need to do this (because I cannot always judge the volume of the background noise against the volume of my own voice) didn't mean I couldn't to some extent learn that skill. I do occasionally need someone to tell me that a restaurant we are in is much quieter than other restaurants and therefore requires quieter voices than other restaurants, or vice versa. But then unless the background volume suddenly changes or fluctuates dramatically during the meal, I know what to do from that point onwards.

A disability may need to be UNDERSTOOD and ACCOMMODATED (such as, when someone helps me judge what volume my voice should be at; or when the caption decoder on the TV is turned on even if I am the only person in a group of people watching that TV set who actually needs or wants the decoder on). But your parents should not be telling you that you should be "nice" to your sister (in the sense of letting her get her way in everything) JUST because she has disabilities. That violates your own rights and ALSO is incredibly demeaning to your sister.

In addition, though, I think it can be worth bearing in mind FridaWrites' comments about power. Even people who feel like their power has been taken away from them (and it sounds like your parents have taken away some of yours, by failing to back you up when you try to defend yourself when your sister crosses your boundaries) still often have more power than they realize. Even though your sister has been granted power over you that doesn't really belong to her, you may have certain types of power over her (or your parents) that you haven't yet learned to recognize. Being conscious of this power can be the only way to ensure that you're not accidentally abusing it in a way you don't mean.

To help you think about power issues, a few on-line essays I recommend, all by blogger Amanda Baggs:

People can be a bit like water
No good guys or bad guys here
Do-gooderism: Links, quotes, and discussion

Hope these are of interest to you, and that they might provide some small insight on the dynamics within your family, including those with your sister (in both directions)

Hope you come back here to let us know how you are doing. From your blog, Night Owl Nest Spot, it seems you have a lot to say.

Night Owl said...

Dear Maryanne,
Thank you for sharing that website with me. I will check it out.
I don't really feel safe enough to share this with my parents. They'd probably be very upset that I'm writing about this stuff on the internet. I'm probably better off looking for help on my own.
I know they are doing their best for what they know. But I don't think that means they can't learn to do things a bit differently and in a healthier way. I think they just refuse to open their eyes and see that, and that's frustrating. Actually they do consistently say "things have to change around here". But never actually do anything differently. It's almost as if they expect us kids to somehow magically provide answers. It isn't fair. :(

Night Owl said...

Dear Andrea,
Thank you for your comment. I wonder if you would mind emailing me personally as I would love to ask you more questions - it would be so helpful. My email is
I am thinking that I'm probably going to need to more seriously consider getting professional help for myself very soon, as I do feel like I am coming apart at the seams a lot of the time. I highly doubt my parents would accept prof help though unless it is recommended by one of my sister's teachers or doctors.
There are so many more "complications" that I haven't mentioned here as well...
I've certainly learned to not trust anyone in my family. This is part of the reason why I feel so violated when someone looks through my stuff. I feel exposed and vunerable, and I'm bracing myself mentally for being beat up (emotionally, possibly also physically). It's a hard spot to be in. But I definitely do not feel as though I can "lean on" anyone here. And there have been situations when I've desperately needed support. I hardly talk to anyone in my family either. Usually they either ignore me or I end up being lectured (sometimes about something entirely off topic). And this hurts me, and so I've learned to not share any of my true self with them. I have the "good daughter/good sister" mask on mostly when I'm at home. And it's very tiring and frustrating, mostly. I just don't feel like anyone here actually knows me. And yes, I know this is mostly my fault. But I really don't believe anyone here wants to know me. (No one in my family even knows that I have sound/colour synesthesia. And I've actually mentioned it before to them!)
I suppose I am somewhat of a rambler too... sorry about that. :)
Anyway, I'd really appreciate it if you emailed me.
Night Owl

Night Owl said...

P.S. The sketch book incident has happened again. I don't know what to do. :( And it's so unfair because there's only so much I can try to avoid and prevent this. I closed my bedroom door and everything! She doesn't even knock, she just barges in and, usually followed by a greeting of a punch or kick, makes some unreasonable demand like give me your sketch book now, or she takes things, like pencils or work or my cell phone, etc. (And usually whatever she takes is thrown out the door (a problem for breakable things)). I just don't know how I can handle this. And I don't feel safe calling my parents for help, because usually that ends worse than having one of my belongings broken or torn. :(
What should I do?

Andrea Shettle, MSW said...

Night Owl: Re, your sister breaking into your bedroom: Could you perhaps invest in buying a lock to put on your bedroom door? Maybe ideally something that you can lock form either inside or outside -- inside so you can keep your privacy when you're in there, and outside so you can keep her from going through your possessions even when you're gone. I don't know what your finances are like, but if you're able to put together the cash it sounds like it could be worth some peace of mind for you.

FridaWrites said...

Wow, this is difficult and an affront to what you treasure most (your art). Some parents don't allow locks on doors (mine wouldn't). I might suggest that getting counseling would help--especially if the counselors would talk to your parents too. Asking for help for yourself might get it for everyone.

I'm sorry there don't seem to be easy solutions--you deserve more, your sister deserves more. I do know that having a very difficult upbringing brought a lot to my life in the long term, as difficult as it was at the time, as painful as it was at the time.

Make your brother your ally--it will help if you can work together in this, and if you can talk with one another directly about the issues. My sister and I ultimately did this (our situation being different from yours).