Had not thought to write, since it is a very tricky question and there is a very fine line of distinction between being concerned and being overprotective when it comes to children with disabilities. Being one of the five siblings with blindness in my family, I have experienced all the methods suggested here for gaining a reasonable degree of independence.
Let me clarify I am not a votary of hyper independence. As I had said about six years back in retina India controversy, An escort is a necessity for a totally blind person, if it is available, affordable and there are no privacy concerns. It however does not mean a blind person cannot and should not travel alone at all. Now, the big question is who that escort should be. If friends, then they must be reliable friends. Not only that, It should be brought home to parents that the friends are reliable. Besides, if hired escort is available, why not, since we can have better control over a person we are paying. Escorting from a distance may also be tried, just to keep out of harm's way, as I am fond of saying, it does not take even half an accident to...... Rajesh -----Original Message----- From: Ai [mailto:ai-boun...@accessindia.inclusivehabitat.in] On Behalf Of Shireen Irani via Ai Sent: Monday, August 07, 2017 1:57 PM To: Share, empower &Enrich Cc: Shireen Irani Subject: Re: [Ai] Question about dealing with parents having a regressive view about the capabilities of the disabled hi rahul, since you are sort of trying to come to terms with adopting not very comfortable means as a last resort, I'm gonna suggest 1 last 1, and then you could choose the safer option from the 2. what if a few of us, perhaps your friends, and a couple of seniors from the community, meet with your parent/s, and sit for a couple of hours trying to reason things out with them? I know it might sound a bit intrusive, but again, in my experience a calm conversation with outsiders is sometimes more effective for changing minds, because 1 gets used to not taking home members too seriously with issues related to change. I think you mentioned that the parent in question lives in a different city? in which case we could either wait till they're all in the same city at some point, or gather a team from the city where he resides. do think about it, it may not be as bad as what you might instantly imagine. and you may not have much to loos, even if there's no success. but I'm reasonably confident that there may be some hope for change. again, this is just 1 of many suggestions, without meaning to be intrusive. best, Shireen. On 8/7/17, George Abraham via Ai <ai@accessindia.inclusivehabitat.in> wrote: > One more small point. Unless one is financial independent can one take such > a stand with the parents. This is true for even non disabled children. > > -----Original Message----- > From: Ai [mailto:ai-boun...@accessindia.inclusivehabitat.in] On Behalf Of > Kanchan Pamnani via Ai > Sent: 05 August 2017 17:16 > To: 'Share, empower &Enrich' > Cc: Kanchan Pamnani > Subject: Re: [Ai] Question about dealing with parents having a regressive > view about the capabilities of the disabled > > Rahul, > You cannot execute and then inform if you want to travel. > Plan well without informing your parents. Only inform them when you are > absolutely sure. > Your words should be that "I am going to x place with ABC on Date by flight > or train". Don't ask them just matter of fact tell them. Don't ask for > money. This trip you have to do with your saved finances. > It is best to give them full details when you tell them. Make a small > itenary - Date of travel,how, from where to where. > Where are you staying and the phone no of the place with address. This may > sound silly in the days of mobile when they can reach you directly. However > it helps them calm down because there will be many times you will not pick > up your mobile. > I had a loving father but a very concerned one. So I dealt with him > properly. I gave him the full information and had answers for everything he > may have asked me. My dad was a lawyer and you know and I knew how many > questions I had to answer. However I went for everything I wanted > to-including holidays with friends. It helps if your folks know your > friends. I always invited my friends home so there was a feeling of trust. > Also I must tell you that until my Dad was alive I got a call every night > even when I went to Delhi for one night. He did not care what I was doing > so > I could have been in my hotel room or at a bar. He just wanted to hear my > voice at 10pm before he fell asleep. I used to get irritated because I > would > think what if something happened to me at 11pm and he could not take care > of > me. Once I was in Connought Place with 2 friends both sighted. Both my > age. > Arun was married and in fact a grandfather. He too got a call from his > father while we were having dinner. Ayesha is a Senior Journalist and > lives > in Delhi. She too got a call from her mother. So calm down parents will be > parents. > Don't do something stupid because then they will hold it over your head > forever. > A lot of people on this group drink extensively. Its not really a nice > scene > when you have a drunk blind person who needs help. Word does reach parents. > > The last thing I would suggest is try to be as independent as possible. > Handle your packing personally and don't ask for help when you are dealing > with your personal things. > Assert yourself but do it maturely. > Kanchan > -----Original Message----- > From: Ai [mailto:ai-boun...@accessindia.inclusivehabitat.in] On Behalf Of > Rahul Bajaj via Ai > Sent: 05 August 2017 16:34 > To: Share, empower &Enrich > Cc: Rahul Bajaj > Subject: Re: [Ai] Question about dealing with parents having a regressive > view about the capabilities of the disabled > > Thanks again. > Geetha, I agree with you that absolute independence is undesirable, but > what > we are talking here about is reasonable independence. When offered the > possibility of travelling with a friend, the parent says that friends are > likely to abandon you in case any problem arises. Only family members or > servants can be trusted. > When asked to seek advice and support from orgs like Enable India, the > parent says that those support systems exist for those who cannot afford > personal servants. They are of no use to someone who can afford personal > helpers. > > The approach outlined by Shireen, though difficult, then remains the only > solution. Shireen, if one wants to travel alone/with a friend, and one is > living with one parent who will inform the unreasonable parent about > everything, how can one adopt the strategy of executing and then informing? > > > Best, > Rahul > > Sent from my iPhone > >> On Aug 5, 2017, at 12:53 PM, Shireen Irani via Ai > <ai@accessindia.inclusivehabitat.in> wrote: >> >> hi Rahul, >> >> most of what i wish to say has been said already, but I'd like to >> reiterate a couple of things that i think are imperative, regardless >> of the temporary discomfort they may cause in the relationship. >> >> as an adult, whether disabled or not, 1 needs to put one's foot down, >> and have the free will to decide one's own actions with total >> responsibility for them. parents often find that difficult to accept, >> partly for control, and partly because of their fear of being of no >> need to the child any more. so if there's no room for a calm >> conversation, one can make one's decisions and break it to them >> immediately before, or after you start executing it. even the language >> you use needs to be assertive and firm, reassuring them that you do >> love and respect them, but these are a few things that you will not >> allow them to control, because they are now yours to take charge of. >> this is also when you ask them: what they think you will do, once >> they're not around any more to protect you from the big bad world. we >> know of countless stories of parents who threaten to harm themselves >> in cases of their children marrying against the parents wishes, but >> after a few months it all defuses and the family is 1 again. so >> particularly with emotional blackmail, I know it sounds unpleasant, >> but it is best to assert, that you will not be deterred by any such >> threats. >> the way to balance things out could be to show them that you'd love >> their intervention in certain areas, but not in a few others. >> >> also, it really does help even if in tiny ways, for them to see other >> blind people moving around more independently. so wherever possible, >> do invite a friend over, introduce them to your parents, and then >> perhaps spontaneously decide to venture out on your own, the 2 of you, >> without opportunity for any further discussion on the matter. >> finally, I think financial independence, and your ability to manage >> your own finances without their help, and also contributing towards >> the running of the house, usually goes a long way as a sign of your >> independent adulthood. if you can politely deny any1 else's help/ >> control in financial matters, and then prove your efficiency with wise >> money management, then it becomes relatively easier to assert your >> independence in other areas. >> of course your own confidence and ability is paramount before you take >> such steps. >> >> what I'd emphasise the most in all this is, do not give in to >> emotional blackmail!! just do not. >> prepare yourself for some temporary strain, and look forward to a >> healthier and more meaningful future with your family. >> >> best, >> >> Shireen. >> >> >>> On 8/5/17, Rahul Bajaj via Ai <ai@accessindia.inclusivehabitat.in> > wrote: >>> Thanks, Alok. I agree that the anxiety and fear of the parent here is >>> divorced from the actual capabilities of the disabled person. >>> Such blind resistance to accepting the proposition that the blind >>> person has to be given space to grow and make their own mistakes is >>> what creates an impasse. >>> If a blind adult is told that they will always need an escort, but >>> the only difference will be that the escort will be their wife >>> instead of their mother in future, that reflects the parent's >>> absolute failure to understand the other person's perspective. >>> >>> I think the suggestions that you have offered are very helpful. >>> However, they nonetheless presuppose that the parent is willing to >>> engage in a calm conversation with a semi open mind. The fundamental >>> problem here is that that also is not true most of the time. >>> The disabled person is told that the parent will start stepping back >>> when the disabled person acquires the requisite independence. When >>> asked to outline the criteria based on which the parent will be able >>> to say that the child has reached that level, the parent becomes >>> confrontational and states that the disabled person has not seen the >>> darker side of the world yet. >>> >>> Best, >>> Rahul >>> >>>> On 05/08/2017, Alok Kaushik <alok.li...@gmail.com> wrote: >>>> Hi Rahul, >>>> What you have mentioned suggests that the fundamental issue is not >>>> about the capabilities of the visually impaired person and parent's >>>> comfort level with it but a limitation that the parent himself / >>>> herself is facing in terms of handling the situation if something >>>> goes wrong. He / she has a fixed idea that he / she is responsible >>>> for the VI person, and hence has to take decisions. >>>> >>>> This is a more difficult scenario to deal with because it is not >>>> about VI person's but their notions of their own limitations and >>>> responsibilities. >>>> In such a case while demonstrating your capabilities is important, >>>> it is equally important to relieve them of the burden of that >>>> sense of responsibility and limitation. This would especially be >>>> relevant in case of single parents, and also in scenarios in >>>> which parents consider themselves to be socially answerable if anything > goes wrong. >>>> >>>> It would be important to make them understand that their support >>>> would not be everlasting, and their help is needed to make >>>> oneself independent, if they really want him / her to live well. >>>> They can better help adapt, practice, and achieve a high level of >>>> comfort while they can still support . One saying that I often use >>>> to quote is "You give your son a fish, he eats today. You teach >>>> him how to fish, he eats every day.". >>>> >>>> I have also seen some parents say that you can do whatever you want >>>> after us but not while we are still around. This again reflects >>>> that the focus of their thinking is not really the limitations of >>>> the visually impaired person but their own limitations. >>>> >>>> One may have to make the parents realize they have a support >>>> system to handle any situation. And also, it needs to come out in >>>> one's communication that he / she is now prepared to take on the >>>> responsibilities of his / her actions. >>>> >>>> I would like to reiterate that patience is still the key. If >>>> one really intends to be independent, it would eventually happen. >>>> In fact at some point being independent would be a requirement >>>> whether one wants to or not. >>>> >>>> Thanks. >>>> Alok >>>> >>>> -----Original Message----- >>>> From: Rahul Bajaj [mailto:rahul.bajaj10...@gmail.com] >>>> Sent: Friday, August 04, 2017 9:16 PM >>>> To: Share, empower &Enrich >>>> Cc: Alok Kaushik >>>> Subject: Re: [Ai] Question about dealing with parents having a >>>> regressive view about the capabilities of the disabled >>>> >>>> Thank you, everyone. Your responses are very insightful and > informative. >>>> >>>> Alok, I agree with you that one has to strive to avoid either of >>>> those extremes. However, all these suggestions operate on the >>>> premise that the parent in question is reasonable and willing to >>>> change their views based on changing circumstances. I am afraid that >>>> is not always the case. Some parents cannot be reasoned with and >>>> offer you a choice between not doing something and doing it as per >>>> their own unreasonable terms. What choice is one left with in such >>>> cases? >>>> Further, while the incremental approach works best, that cannot >>>> address a parent's unfounded fear that something horrible will happen. >>>> Finally, if a parent is blackmailing a child into not doing >>>> something or doing it in a very different way from what the child >>>> wants without even articulating genuine safety concerns that make >>>> them wary, what should one do? >>>> >>>> Best, >>>> Rahul >>>> >>>> Sent from my iPhone >>>> >>>>> On Aug 4, 2017, at 2:36 PM, Alok Kaushik via Ai >>>>> <ai@accessindia.inclusivehabitat.in> wrote: >>>>> >>>>> Hi Rahul, >>>>> You have brought up a very relevant subject. Although I always >>>>> had a very understanding family, I also had to experience a >>>>> phase in which the family members had to be brought to a >>>>> certain comfort level. I never faced any restrictions but >>>>> additional comfort level had to be developed, and I can easily >>>>> observe the change in level of comfort and confidence they now >>>>> have. >>>>> >>>>> Besides that I have also seen several cases around me, in which >>>>> similar issues as mentioned by you were present. Here are my >>>>> observations and thoughts. >>>>> >>>>> I do not think that any organization or friend will be able to >>>>> make a decisive impact on the thinking of parents / family >>>>> members just by telling them about some of the other people who >>>>> have been able to do much more. It largely depends on how much >>>>> drive the visually impaired person himself / herself has to become >>>>> independent, and how effectively that is expressed. >>>>> >>>>> One of the main reasons of the parents is the safety concern. One >>>>> still needs to take a decision to go ahead and do things but >>>>> taking some measures could help understand the parents that he / >>>>> she is not reckless about the safety. For example, one can share >>>>> the taxi number while travelling outside at home, it communicates >>>>> the same message, while being an actual safety measure. Letting the >>>>> family members know when to expect you back home realistically >>>>> would provide them extra comfort. These actions are simply related >>>>> to information sharing and do not necessarily restricts oneself. >>>>> This goes a long way in developing a comfort level without >>>>> creating any friction in the relationship. >>>>> >>>>> Besides moving outdoors, if there are other things that one is >>>>> looking to do but is facing restrictive approach, comfort level can >>>>> best be created by generating opportunities to demonstrate that one >>>>> would be happy doing such a task and can do it. Communicating >>>>> that he / she would definitely ask for help if needed is also >>>>> very effective. There is no better conviction then actually seeing >>>>> a person doing something. >>>>> >>>>> A few things that we need to keep in mind is that we ourselves >>>>> need to be patient while persisting with the effort to demonstrate >>>>> and develop and confidence in others. It will take some time >>>>> and repeated observations by others before their scepticism could >>>>> change to conviction. >>>>> >>>>> It is possible that one may have to be more assertive at times, >>>>> but it would be good to balance it out rather quickly to avoid any >>>>> negative effect on the relationship. Underlying feeling behind the >>>>> assertiveness needs to be that of confidence and not disregard. >>>>> >>>>> Of course there would be two extremes, one in which a person >>>>> chooses to enjoy the convenience that a protective environment >>>>> offers, which comes back and bites hard once that supportive >>>>> environment collapses or dents, or in other in which a person >>>>> becomes a rebel, gains the independence and the relationships >>>>> languishes. >>>>> >>>>> My thoughts are to bring about a change while sustaining good >>>>> relationships. >>>>> >>>>> Thanks. >>>>> Alok >>>>> >>>>> -----Original Message----- >>>>> From: Ai [mailto:ai-boun...@accessindia.inclusivehabitat.in] On >>>>> Behalf Of Rahul Bajaj via Ai >>>>> Sent: Friday, August 04, 2017 1:12 PM >>>>> To: ai@accessindia.inclusivehabitat.in >>>>> Cc: Rahul Bajaj >>>>> Subject: [Ai] Question about dealing with parents having a >>>>> regressive view about the capabilities of the disabled >>>>> >>>>> Hi Everyone, >>>>> >>>>> I hope this message finds you well. >>>>> At the outset, let me clarify that this question may or may not >>>>> have anything to do with my own personal experiences, so I'd >>>>> appreciate it if the aim of the conversation could be to understand >>>>> this phenomenon in general terms as opposed to focusing too much on my > own situation. >>>>> >>>>> While a lot of us focus on the importance of sensitizing various >>>>> stakeholders, such as employers, academic institutions and others >>>>> about the capabilities of the disabled, few focus on the >>>>> discrimination that the disabled face in their own homes due to the >>>>> view that their own family has about their capabilities or >>>>> potential. >>>>> More specifically, if one has a parent who is unwilling to learn >>>>> from the experiences of other blind people and give their disabled >>>>> child the freedom that we all deserve, to what extent should one >>>>> follow what such a parent says? >>>>> Further, while safety is doubtless important, if the disabled >>>>> person has the requisite maturity to ascertain if they will be safe >>>>> in a given environment, should they act as per their own assessment >>>>> or follow what their parent is saying, in the fear of alienating them? >>>>> I think there are many emotional forces at play in a family setting >>>>> that may not be involved in other settings. For instance, one often >>>>> hears of parents emotionally blackmailing their children into >>>>> acting the way they want without recognizing that this may not be >>>>> in the child's best interest. >>>>> Finally, what makes the situation worse is the fact that the >>>>> external world [friends and wellwishers] is also often apprehensive >>>>> to interfere in these matters on behalf of the disabled person on >>>>> the ground that this is an internal family matter, so that makes it >>>>> significantly harder for the disabled person to fully assert >>>>> himself/herself. >>>>> >>>>> If any of you have dealt with the above, I'd be curious to know >>>>> what you think about these issues. >>>>> I am mindful of the fact that not many people would be open to >>>>> discussing this on a public forum, so please feel free to mail me >>>>> off-list about this. Further, not many may see this as a problem, >>>>> given how accustomed they are to succumbing to their parents' >>>>> wishes, no matter how uninformed and inappropriate those wishes may > be. >>>>> >>>>> Best, >>>>> Rahul >>>>> Disclaimer: >>>>> 1. Contents of the mails, factual, or otherwise, reflect the >>>>> thinking of the person sending the mail and AI in no way relates >>>>> itself to its veracity; >>>>> >>>>> 2. AI cannot be held liable for any commission/omission based on >>>>> the mails sent through this mailing list.. >>>>> >>>>> >>>>> >>>>> To check if the post reached the list or to search for old posting, >>>>> reach: >>>>> https://www.mail-archive.com/ai@accessindia.inclusivehabitat.in/mai >>>>> lli st.html _______________________________________________ >>>>> >>>>> >>>>> Ai mailing list >>>>> Ai@accessindia.inclusivehabitat.in >>>>> http://accessindia.inclusivehabitat.in/mailman/listinfo/ai >>>>> >>>>> Disclaimer: >>>>> 1. Contents of the mails, factual, or otherwise, reflect the >>>>> thinking of the person sending the mail and AI in no way relates >>>>> itself to its veracity; >>>>> >>>>> 2. AI cannot be held liable for any commission/omission based on >>>>> the mails sent through this mailing list.. >>>>> >>>>> >>>>> >>>>> To check if the post reached the list or to search for old posting, >>>>> reach: >>>>> https://www.mail-archive.com/ai@accessindia.inclusivehabitat.in/mai >>>>> lli st.html _______________________________________________ >>>>> >>>>> >>>>> Ai mailing list >>>>> Ai@accessindia.inclusivehabitat.in >>>>> http://accessindia.inclusivehabitat.in/mailman/listinfo/ai >>>> >>>> >>> Disclaimer: >>> 1. Contents of the mails, factual, or otherwise, reflect the thinking >>> of the person sending the mail and AI in no way relates itself to its >>> veracity; >>> >>> 2. AI cannot be held liable for any commission/omission based on the >>> mails sent through this mailing list.. >>> >>> >>> >>> To check if the post reached the list or to search for old posting, > reach: >>> https://www.mail-archive.com/ai@accessindia.inclusivehabitat.in/maill >>> ist.html _______________________________________________ >>> >>> >>> Ai mailing list >>> Ai@accessindia.inclusivehabitat.in >>> http://accessindia.inclusivehabitat.in/mailman/listinfo/ai >>> >> Disclaimer: >> 1. Contents of the mails, factual, or otherwise, reflect the thinking >> of the person sending the mail and AI in no way relates itself to its >> veracity; >> >> 2. AI cannot be held liable for any commission/omission based on the > mails > sent through this mailing list.. >> >> >> >> To check if the post reached the list or to search for old posting, > reach: >> https://www.mail-archive.com/ai@accessindia.inclusivehabitat.in/mailli >> st.html _______________________________________________ >> >> >> Ai mailing list >> Ai@accessindia.inclusivehabitat.in >> http://accessindia.inclusivehabitat.in/mailman/listinfo/ai > Disclaimer: > 1. Contents of the mails, factual, or otherwise, reflect the thinking of > the > person sending the mail and AI in no way relates itself to its veracity; > > 2. 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