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
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