About the Meaning of Blindness when You Have Additional Disabilities

The new Thought Provoker 104, once again, made me think about my own situation and the blind movement’s rigid ideas about what blind people are like. It is about a guy with multiple disabilities being angry cause a group of blind people are making generalized statements about what blindness means and doesn’t mean. The underlying opinion seems to be that people with multiple disabilities may not accomplish the same as people who are “just blind”. Actually, it should say that what one blind individual can accomplish isn’t the same as what another blind person can accomplish, whether that person has additional disabilities (that are or are not identified) or not, but blindness alone does not prevent a person from doing this or that.

Too often, when I couldn’t handle a situation for some reason, other clients at the training home have blamed it on my blindness by saying something along the lines of “But she can’t see…”, and staff members at least didn’t protest. I often did, saying that it isn’t my blindness that gets me like this, but it’s just something of mine. It doesn’t have a (medical or psychiatric) label, but that doesn’t mean it’s due to blindness, which is my only medical label. In the same way, the guy in the provoker is making a mistake by concluding that blindness doesn’t mean the same for a person who is “just blind” as it means for someone with additional disabilities: blindness may have different meanings depending on a person’s circumstances – in a country like the U.S., blindness means something totally different than in the developing world, for example -, but in similar socio-economic circumstances, it is not blindness by itself that is causing the additonal problems for the person with additional disabilities. That is not to say it’s the additional disabilities, cause then a deaf-blind, wheelchair-using person could be just as accomplished as everyone without any doubt because the blind, deaf or wheelchair-using communities each think that people in that community can accomplish as much as the general population. It’s the interaction of several medical, personal, social, economic and cultural factors that create what a person can and cannot accomplish, not how many or which disability/ies a person has.

For a person with multiple issues, additional barriers may arise because the compensatory techniques used by a person with one disability do not work because of the additional disability. For example, deaf-blind people have more difficulty communicating than either the blind or the deaf, because they cannot hear (the blind person’s communication mechanism) and they cannot see sign language or lip-read (the deaf person’s communication method). It is neither blindness, nor deafness alone that causes this person to have his communication difficulties, but the combination of both.

Once again, as always, I hate the medicalizing used by the blind movement in this provoker to justify individual differences amongst the blind, because how many or which labels a person has, is not the sole determiner of how a person will do. Like the guy in this provoker highlights, it’s also the environment’s attitudes – his not being hired -, for instance, and I still hate the judgment that if you’re “just blind”, you shouldn’t be having any barriers in society.

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Local Elections

Man, it’s five days after the local elections last Tuesday, and I’ve still not expressed my joy yet: the Socialist Party has more than doubled the number of seats in municipal councils throughout the country! the Labour Party (PvdA) has also won considerably. GroenLinks, the other socialist party besides the SP, has lost slightly, but not so much as to be affected. The left-wing parties now have majorities in 37 municipal councils if I’m correct. Apeldoorn is not among them, and I attribute that partly to the fact that the SP did not participate. The PvdA has won considerably and GroenLinks also won one seat (going from three to four of 39), but they’re not enough to form a majority coalition, so it’s probably going to be the everlasting broad coalition of PvdA, CDA (Christian Democrats) and VVD (right-wing liberals). But at least Nijmegen is going to retain its left-wing coalition. Of course, I’m hoping that in May, 2007 we’re going to get a left-wing government.

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Yet More on Social Interaction Difficulties

So, last Monday the training home staff were having their monthly discussion on me and they collectively decided I shouldn’t say I have a doorknob’s social skills anymore. They seem to think I’m not so bad at this after all, and I can follow their reasoning, in that mostly I know the rules of social skills (ie. my former paradigm about not understanding stuff is rather insignificant) and I mostly seem to behave reasonably socially. There remain times when I don’t do it “right”, and I don’t suppose the training home staff disagree, but the extreme skills deficits I used to think I had, are at least somewhat exaggerated and at most it’s not the problem at all.

However, I contend that is not the same as saying I have no problem in social interaction. Renee seemed to relate my getting “locked up inside” during scheduled discussions to the fact that we were having scheduled discussions and I was pressured to be sociable. I respectfully disagree, cause what happens to me during scheduled discussions some of the time, has been happening to me for six years at least and not just in response to demands that I act socially, like last Thursday when a staff folk asked me to initiate a discussion. That’s why I got to speak of initiative a couple of weeks ago, and that does play some part, but it isn’t all. I remember my many discussions with my tutor in tenth, eleventh and twelfth grade that ended up in my not responding at all, and in all of these it was in relation to a question asked by my tutor, so no need to initiate anything. In scheduled discussions, it was always an issue of initiating, since whenever the staff folk asked me a question as a discussion-starter, the discussions turned out well as far as discussing was concerned (I’m not going to comment on the plan, since I mostly didn’t follow that). However, I want to be clear that my difficulties in discussions are not limited to scheduled ones.

Actually, what I mean is that, just because I appear to behave more socially than I’d thought I did, does not mean I make up my perception of my difficulties. I may’ve distorted them – what causes a person to have social interaction difficulties other than simple social skills deficits? – but
I’ve been around in places without scheduled discussions and a lot of emphasis on the details of social behaviour long enough to know that my difficulties are not solely due to the emphasis placed on them. In school, at rehab and when going for discussions outside of the training home now, it’s still apparent that I have difficulties. I had difficulty at the meeting of my former high school graduation class, had difficulty when calling the fitness centre, and the fact that my discussion with the student counsellor went well, was not attributable to me. So I have no problem with comments on the form of my difficulties, but I’m not going to agree with a “don’t nag about it” opinion.

I’ve had such opinions more than once, but most often they were not really the people’s opinions. I’ve never seen anyone truly view my difficulties as non-existent. The closest people have come to thinking so is to think that, indeed, I did have difficulties, but it wasn’t anything they knew how to handle except by lowering their expectations of me, leading to an appearance that I had no problem. I, personally, don’t see a problem with lowering expectations cause a person isn’t going to meet higher ones, but I do have a problem with an interpretation of changes on the other person’s part as a reason to think my problems after all aren’t so bad. For instance, it was no surprise to me that both my discussions wtih Arda last week and the one with the trainee this Tuesday, went well and the discussions with staff members last week Tuesday and this Thursday did not, when firstly the subject matter of the discussions that went well was much clearer than of the other ones and secondly, I didn’t have to start off with the discussion at all. What is interpreted as a pressure to have discussions by staff members, is interpreted as a deficit in having them by me, and only that happens in discussions other than the scheduled ones can clarify what is actually going on, which is that both are true to an extent.

I’ve had all too many experiences with people who, after lowering their expectations of social behaviour for me, decide that I’m making a fuss of nothing by saying I have problems in this area. So far, the staff people seem to realize that I do still have some difficulties, and their decision that my doorknob’s social skills aren’t so bad after all, is more of a paradigm shift in the nature of my deficits, than it is a denying of their existence. And I pretty much agree to the paradigm shift, cause it’s long become clear to me that it’s at least not a lack of knowledge of how to act socially (to the point where I get annoyed when people are explaining simple conventions of social interaction), and, even though sometimes I still forget to act socially (eg. I forgot to offer my father coffee when he was visiting me to install a TV), overall I seem to “remember” the rules quite reasonably. Does that mean that I have no difficulties in this area? Not to me, and training home folks seem to agree in some way. All it means is that it’s not that I don’t know how to act socially, ie. a social skills deficit.

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Thoughts about Social Skills and a Scheduled Discussion

This afternoon, I had a scheduled discussion that for once went pretty well, even though I’d not remembered the plan and had forgotten most of the “practice” rules (stuff like introing myself that I don’t need to do at every discussion but that I’m supposed to need to train). In advance, I’d listed in my head all the things that I had to remember when Arda came to my apartment: that she wanted coffee, that I didn’t have milk or sugar should she want that (but I knew she most likely wouldn’t), that I had no beeper (to let me know when the cup is full) so that I’d have to ask her whether I could pour the coffee or she wanted to do it herself, that I had to open the curtains (I always have my lights out and curtains drawn), that I had to offer her a seat… I remembered everything except for the curtains, which I didn’t realize till we were nearly finished with the discussion and I saw that they were drawn. Unfortunately, that specific thing has gotten a symbol function for not taking into account another person’s perspective cause firstly it’s the thing I most often forget and secondly I remember a remark a few weeks ago that sounded rather moralistic, as if I didn’t know that sighted people needed light. I as I said also forgot the introing stuff and all of the other official rules on the plan, though the discussion was pretty realistic for one with someone I know, which Arda is.

We started out about last Monday’s local political debate, then got to discuss choirs and singing productions (cause Arda’s going to have a show with a choir and I also belonged to a choir) and then for some reason, got into a discussion of philosophy, in which I explained the principles of Idealism. Well actually they were the principles of subjective or personal Idealism, that I subscribe to: that reality does not exist independent of people’s minds (which is the definition of philosophical Idealism) and that hence, everyone’s perception (and rational knowledge) forms their reality (which is more confined to subjective/personal Idealism). Arda came up with the tale of the blind men and the elephant, which I, till then, had only thought of as a stereotypic portrayal of blind people’s conceptualization difficulties but which holds merit in other senses as well, as it was originally intended.

For some reason, in any case, the discussion went quite well, and Arda couldn’t keep from reminding me about that. She got into a statement about my not being so socially unskilled as I say (and think) I am. I said that everyone says I am socially inept, so I assume I am. Arda got into a statement about it being some kind of what she called a “self-fulfilling prophecy”, ie. that cause people tell me I’m socially unskilled and I believe them, I’ll get to come across like that. Arda described me as shy, and it got me thinking about this concept.

When you’d ask me whether I’m shy, I’d always say I am not. In fact, over the past couple of weeks I’ve denied it several times in this journal. And it makes sense: I associate shyness with some type of fear of people, a fear I don’t recognize in myself – butr I don’t speak emotion language at all, and I must admit that some of the things that I feel in some situations (especially when getting “locked up inside”) are described as such. Furthermore, I have no problem when having a heated political debate, when I see many shy people retreat, even when they’re actually interested in politics like myself. And I have absolutely no problem in public speaking, which 90% of shy folks do have. Now that’s about the contrary of the scheduled discussions I’m having, cause there’s more of an interaction and there’s usually only one conversation partner.

On the other hand, in some situations I recognize typical feelings and thoughts associated with shyness, like when getting “locked up inside” cause I feel I’m going to make a fool of myself by saying whatever I want to say. It was, at least, how the feeling is most obviously apparent, but in many cases, as I said last week there’s not really any reasoning or thinking involved at all. Well, there should be as feelings never come just like that, but not anything I can understand. That’s gotten me not to associate this feeling with my passivity in social situations that I discussed last week Tuesday, and in some way, they’re still distinct: in some situations I truly forget such things as introing myself or I don’t understan when/how to do it in a particular situation. In other words, just cause one paradigm about the nature of my social deficits may be correct, doesn’t mean another isn’t. Like, just cause in some situations fear may play a role in interaction, in some situations it’s also about forgetting the “rules” or not understanding the particular situation, but I’ve come to realize that it shouldn’t be my universal paradigm anymore.

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Thoughts on Negative Feelings, Uninvolvement in Activities, and Participation in Society

In the book on visual impairment I’m currently reading, I found an interview with a then 21-year-old woman, born blind, who had seemingly always been completely integrated in society. She’d been in special ed for two years in around 1980 cause at the time apparently, blind children couldn’t be taught braille and the like by an itinerant teacher, but for the rest of her life she’s always been in mainstream education and in the mainstream world in general. At the time of the interview, she studied Dutch at university, had a good social network and did lots of community service. In short, she’s exactly the image I dreamt of becoming when I was thirteen, and now the image I dream of becoming with the exception that my major has changed to American studies. But I’m very different and, while I still hope to at one point make it to this position, I still realize my deficits that – whether I want to admit them now or not – would be especially apparent when trying to have an integrated position.

It isn’t so much a lack of effort. I’ve always been eager to volunteer for the Socialist Party, for instance, and I keep trying despite some negative experiences, like the bringing round flyers in late 2004. That negative encounter was more cause my parents’ and my own attitudes than it was cause of a real lack of ability: with enough effort, I could’ve brought around these flyers, but it all took me too long, I attracted the attention of overly-worried strangers and eventually gave up on the basis that a blind person is supposedly crazy if she thinks she can bring around flyers. I still wouldn’t easily volunteer to bring around flyers again, except in a block of apartments, cause I don’t feel that it’s my duty to fulfill a task a sighted person (or more experienced and skilled blind person) can perform much more efficiently, solely to prove that I can do it with enough effort. Over the last couple of months, I’ve lost some of my feeling that I had to prove I was capable (or “normal”, as I used to vaguely call it) at any cost. I still want to be as independent as possible, and I don’t think there’s anything wrong with that, but for me there now has to be another incentive to do something beyodn “just proving I can do it”. That applies to things I have never done before or wouldn’t know exactly how to accomplish but feel I should be able of, but it automatically of course also applies to tasks I’ve mastered, cause then it’s not about proving I can do it, but about enjoying the independence I have. Like on my travel to Nijmegen, the only thing concerned with the moral value of independence was my dislike for the opinion that I should be taught each and every new route. I might’ve believed that, had I not heard of Kenneth Jernigan pickin gup his cane and flying to Japan. All the rest was just that I wanted to travel the route independently cause I knew I could, I wanted to arrange my own college affairs and I would have to travel this route more often once studying in Nijmegen.

In the case of volunteering, I used to apply for every available function without consideration of my likes and abilities at one time, and used to retreat completely a short while later. The first stage happened in late 2002 and early 2003, and it includes my dandidacy for the SP Apeldoorn board of directors after having been a party member for only three months and without any previous political experience and, of course, my successful application to the Model European Parliament (a debating contest). That’s not real volunteering, but it’s a way of coming out into the community. The second period, where I pretty much retreated, started in the summer of 2003 after having become troubled with the realization of my being extremely behind in many areas, and lasted for about sixteen months. Then I had the bringing round flyers episode, which happened when I was called by an SP member and finally felt I could mean something to somebody, and hence, once again, applied without considerations. It failed and I retreated once again. I only participated in the 2005 high school debating contest cause my Dutch teacher explicitly asked me – and of course I liked it, but I’d never dared to take the initiative, which I had done both with the SP board of directors thing and with the Model European Parliament. From the summer of 2005 on, I’ve tried to get out of the position of retreating/withdrawal. I wanted to be on the rehab student council and posed my interest. I arranged college stuff in February and decided to go to events like Ziezo (an exhibition of aids and appliances for the visually impaired) and last Monday’s political youth debate in preparation for the local election. Do I consider these to be important things? Yes, I do, cause I want to be more participating than I am now. There’s a difference, of course, between participating in blind-oriented positions and in regular ones, the former being easier cause then my blindness doesn’t contribute to my reasons for feeling I shouldn’t do the stated thing. And yes, my blindness does contribute in many situations. I never really recognized it, or didn’t want to admit it, but for some reason I did always feel that people wouldnt’w ant me in some position cause I’m blind. And in some situations, this has proven true, like my geography teacher’s worry in having me participate in the Model European Parliament (he didn’t select me, but he did lorganize the whole thing) or the bringing round flyers thing, but in some it hasn’t, like the 2005 debating contest or my candidacy for the SP Apeldoorn board of directors in early 2003.

Still, it’s not only my blindness, cause even among other blind people I have this feeling of not being able to contribute valuably. Not at rehab, but at rehab I had the advantage of being a step further than most students in the practical sense, ie. in knowing about adaptations and organizations. But in most other places, I’ve always been the least capable person, except,, of course, in academic sense, but I continue to hate that quality of mine cause its’far too often contrasted with my deficits. Here at the training home I’ve heard the phrase “You can do that, there’s nothing wrong with your (memory, intelligence, etc.),” far too often. And I’d agree, so it isn’t cause I don’t think I’m cpable, that I cannot do something; for some reason I truly can’t.

The situation I’m in, and have always been in, or the way I’ve always perceived my situation to be, has gotten me to have quite a negative attitude, and I still do, and I know that isn’t going to contribute to my functioning adequately. I therefore try to step out of my bad feelings at some points, but I cannot keep the “happy shiny people” look 24/7. I realize that the two – uninvolvement in activities and negative feelings – only reinforce each other, and so I try to involve myself even when not feeling well. That applies on several levels: there’s the general negative feelings about myself, that I try to combat by getting involved in social activities and community service that I like – at least when the feelings are not at their worst, cause when they are (like in 2004/2005 mostly) I do hardly anything -, and in which I’ll have to seek a balance between taking every opportunity that appears without regard for my abilities or likes and declining everything cause I don’t feel capable. After all, never minding how much of a positive feeling I had about getting the assignment of bringing round flyers, it shouldn’t be the goal in itself and once the flyers didn’t get to be brought around, that only made the situation, in both respects, worse.

On a lower level, there are things i’ve been noticing over the past couple of months: that, when not feeling well and when having an empty schedule (or no homework, when I was still in school), I sometimes lie in bed at random times of the day doing nothing. I often feel truly tired, but ironically it usually gets better with activity. Like this afternoon I spent about forty minutes in bed before the lunch and went to the lunch really tired, but felt more active afterward (we’d had a really non-serious discussion during lunch), felt once again a little tired in the early evening (no lying in bed during the afternoon) and yet managed to play cards with fellow clients till 9:45 PM and now it’s over 11:30. Part of it does have to do with poor sleeping (I’ve been somewhat insomniac for a veyr long time), but part of it to me doesn’t, and it’s something I just have to “step out”. It’s not easy to involve oneself when one doesn’t feel like it, but I’ve long realized this it has to be done.

That last sentence sounds like not taking my real issues seriously, in a way, but I cannot say anything else about it. When I want to do something, like interact with other people, but get “locked up inside”, I’ve long realizedi t’s not something I “just step out”, and that also limits my involvement. It’s still something I want to improve, but not knowing how to and knowing that no-one else knows, make me have no other choice but to make these assertations. After all, if nothing helps, then there’s at least the good intention to help a little bit.

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