[blindkid] A Response

Wed Jul 16 10:02:05 UTC 2014

I worked with a young man who was autistic and had a very low IQ. He
used a three wheel bicycle that people with a physical disability
would use and knew the boundaries of where he could ride.  He also had
a trampoleen in the back yard with a net around it so he could not
fall off. It gave him some independence.

On 7/16/14, Lalena Fayre via blindkid <blindkid at nfbnet.org> wrote:
> Hi Ashley
> Unfortunately my life as a single parent doesn't give me a great deal of
> time but of course I will contribute as I can.
>
> In my eyes a heated discussion is sometimes needed and necessary. To step
> in and cool the room as if we are bunch of children is disrespectful IMHO.
> If we are ever going to understand an opposing viewpoint then we need to be
> allowed to voice words bluntly.
>
> I really like your idea of activities like yoga and swimming. He has shown
> interest in bicycling ad well but I'm not sure quite how to do that
> independently. He's too big for a typical tricycle and wants that
> independence. So hmmm......there. that's a specific question. LOL
> On Jul 15, 2014 8:13 PM, "Ashley Bramlett" <bookwormahb at earthlink.net>
> wrote:
>
>> Hi Lalena,
>>
>> I think your original post raised some good concerns and possible ideas
>> for action.
>> I hope that you can move forward to implement some changes along with
>> those who expressed a willingness and open mindedness to do so.
>>
>> Its too bad you felt criticized about it. Your post was definitely
>> respectful. As for Carlton's response, she was addressing the whole group,
>> not just you. Many posts, for instance, can be interpreted as "us" versus
>> "them".
>> I think her point was the discussion was getting heated and sometimes
>> unproductive and hinted at toning it down.
>> True some may not understand or admit we need to be more inclusive. But
>> that's going to happen in any group. I saw many listers be supportive and
>> those are those to whom you should reach out to.
>>
>> I think you have some valid concerns and I understand your reactions.
>> Email is a hard medium to discuss hard and multi fascited issues so
>> understandably your words may be misrepresented. But for all those that do
>> that, there's lots of supportive people.
>>
>> I hope you continue to find opportunities for your son and ways he can
>> grow and learn with being blind. You might start him with small groups of
>> kids and maybe one on one recreation where he can be taught hands-on.
>> Activities such as swimming, yoga, running and  tandem cycling come to
>> mind. He might even be able to start with a tricycle.
>> As long as he has some receptive language ability and does not mind being
>> touched to learn the skill, I think its doable.
>> Good to hear you have a TR program in your area as this should help him
>> stay busy.
>>
>> The only thing I disagree with is you disliked the special issue on MD
>> kids. Actually I liked the label because it was several articles grouped
>> addressing MD and was labeled as such, and thus was easy to find. I do not
>> see much wrong with highlighting a topic deserving of special attention;
>> we
>> have an issue on mobility, technology and low vision. One on MD simply
>> highlights a special consideration of blindness just as we all use
>> specialized technology or specialized mobility techniques.
>> There are articles sprinkled through the magazine as the editor indicated;
>> just you may easily overlook them due to their labels.
>>
>> Anyway, I hope you got some of the support and understanding you needed
>> amidst the negative posts.
>>
>> Sincerely,
>> Ashley
>>
>> -----Original Message----- From: Lalena Fayre via blindkid
>> Sent: Tuesday, July 15, 2014 8:49 PM
>> To: blindkid at nfbnet.org
>> Subject: [blindkid] A Response
>>
>> Because I was criticized for not providing an appropriate new title to my
>> message so it would make sense, I just decided to create a new message.
>> Anything to lessen combativeness is appropriate.
>>
>> I want to point out a few things first.
>>
>> 1. I have never said I have anything against successful blind people.
>> Quite
>> the contrary. I was married to a successful blind person for 13 years. I
>> have met many successful blind people. I have absolutely nothing against a
>> successful person.
>>
>> 2. I don't think it's easy for the average person who has little knowledge
>> of the blind to raise a "vanilla blind" child. Again, quite the contrary.
>> I
>> went into the adoption of my blind, MD son with no fear of blindness and
>> few of the fears of him not being successful due to his blindness. In the
>> school district I really encourage parents with a low-vision or blind
>> child
>> with positive philosophy. But I also understand that it's a grieving
>> process that most parent's go through. But don't think that some how I
>> believe you have it "easy". It's different, not easy.
>>
>> The whole reason I wrote original isn't about getting specific help for my
>> son. There is no burning question that I have regarding him. If there was
>> I
>> would ask the specific questions that I wanted help with. The whole reason
>> I wrote was multifold:
>>
>> 1. to point out that I don't see stories of kids like mine, who are blind
>> with multiple disabilities. Yes, I read the special edition of Future
>> Reflections with much interest. I lamented that these types of articles
>> weren't sprinkled through out various editions. By making it a special
>> edition it makes it seem like blind child with other disabilities are the
>> minority when they aren't.
>>
>> 2. to point out how the voices of the blind/MD parents are quieter and
>> perhaps someone else feels as I do that no one else understands the sheer
>> strengthen, challenge, and difficulty we face in not only racing a blind
>> child (which is a challenge in and of itself) but a child with a scale
>> from
>> mild to severe other disabilities.
>>
>> 3. to point out that as an organization we need to be aware of the weakest
>> among us so we can work to strengthen us all.
>>
>> When I read through Carlton's response I felt like I honestly don't really
>> know how to communicate. Why? Well, let me break it down....
>>
>> ----- Instead of hiding the hurt, we need to share these feelings – in as
>> respectful a manner as possible. (Lashing out is not a fatal act, but it
>> can cause others to feel defensive and end up slowing the healing we
>> seek.)
>> -----
>>
>> Thus the reason I wrote my email. It was respectful but obviously it's
>> been
>> interpreted as lashing out and thus, that warrants the defensive feelings
>> I've received.
>>
>> ------ The most concerning portion of this communication, to my mind, has
>> been the “us-versus-them” tone some of the conversations have taken. -----
>> Perhaps it is the form, my poor choice of language, or some other factor
>> but I never say this is an "us-versus-them". As I said earlier, one group
>> doesn't have it easier than the other. However, it is different. And when
>> the organization focuses predominantly on one over the other, that causes
>> the "us-versus-them" attitude. When the issues of blind, MD-families
>> warrants a "special" issue of Future Reflections, that sends the message
>> that "these" are different than "us". We should be talking about all
>> families. When an article is written by an expert, ask them to focus a 2-4
>> paragraphs on the blind/MD-child or the blind-only child. This shows that
>> both are considered.
>>
>> ---- Apparently, some have criticized that my workshop, “Hands Off!” could
>> be useful for all parents of all blind children. Exactly. That’s the idea.
>> -----
>> Yes, that is the idea. I wish the reverse could have been said for the
>> non-blind/MD track. I've sit in countless workshops where the information
>> is great but inapplicable to children with multiple disabilities. I've
>> point blank asked how this technique could be adapted to suit all
>> children,
>> few have had answered. So in essence when I look at the workshops, I have
>> to evaluate the like hood that this would be relevant to my child or if
>> the
>> speaker could answer questions about adaption.
>>
>> Being hand's off is very important. You are right children are
>> over-handled
>> by adults and this is an issue that should be addressed particularly with
>> "vanilla blind" children. But SOMETIMES MD-blind children need to have
>> more
>> handling by adults in order to be successful. Was this addressed in the
>> seminar?
>>
>> ---- Please note that the NOPBC is committed to continuing to offer
>> workshops geared toward parents of children with multiple disabilities,
>> including blindness/visual impairment. This commitment has been
>> longstanding, and it will not waver. Our ability to improve in this area
>> will be strengthened by a frank, constructive collaboration with parents
>> of
>> children with multiple disabilities, including blindness/visual
>> impairment.
>> Please do not accuse me of “victim blaming” because we have shown our
>> commitment in this regard for many years.
>>
>> I used the phrase "victim blaming" because many of the responses to my
>> pointing out some of the areas that the NOPBC needs to shed more light on
>> was that I should do it. It is my responsibility as a parent to a MD/blind
>> child to create this focus within the NOPBC/NFB. This is removing any
>> responsibility that the organization has to use their many resources and
>> the wealth of professionals and street-proven parents, to give families
>> who
>> are struggling  a hand up. The message was very clearly that it is MY
>> responsibility to lead the organization into this focus. THAT is victim
>> blaming.
>>
>> Also, I was then criticized because I have been an advocate for my son. I
>> have used the knowledge and positive philosophy I have earned through my
>> years in the NFB to encourage Braille exposure, even if he doesn't have
>> the
>> cognitive ability at this point to learn Braille, to have a white cane, to
>> have an evaluation by the State blind school, to request that that team do
>> a training for the remainder of his team, all of these things. The
>> attitude
>> was - well, you don't have any problems so what are you complaining
>> about. I'm complaining because I know that not every family on this list
>> who is facing raising a child who is blind or MD/blind has the gumption to
>> say - "hey I need some support here."
>>
>> The fact is I've been around the NFB awhile. I've seen the politics. I've
>> seen the hushing of people who speak too loudly. I read through the many
>> responses that misrepresented or misconstrued my words. And it just
>> saddens
>> me. Because the group of people who should understand are too busy with
>> pride to express that maybe some things need to change.
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-- 
Marianne Denning, TVI, MA
Teacher of students who are blind or visually impaired
(513) 607-6053