SCI won't be cured by hyped up
language but by science and the active involvement of those living with the
horrors of paralysis and their supporters.
Now, I
don’t know about you, but when I hear statements like this it sounds like
people are getting out of wheelchairs for good. A look through the research and
what I find is that while it is helping people improve balance and even some ambulation;
these same people are still using wheelchairs. Unless you try to be literal
about it, this is not, “getting people
out of wheelchairs,” in the way that most regular people would understand
it.
I don’t
like claims like this because they spread false hope especially amongst the
newly injured and I told this to Mr. Wilderotter. I asked for an apology, but I
think I got something much better. Looking at their next fundraising email, there was a fundamental difference in tone.
I’m
heartened by the fact that maybe foundations do listen a little (after three years of campaigns aimed
against this kind of behaviour).
This
time, instead of making such broad sweeping statements that have no educational
value whatsoever, Mr. Wilderotter listed three things that CDRF is working on
which he thinks is important to both care and the future of cure. I would have
liked some links in the email so people can see exactly what he’s talking
about, but it’s a lot better than saying, “getting
people out of wheelchairs right now,” without explaining the whole story.
To
tell you the truth, I actually disagree with the importance of some of the
three things Mr. Wilderotter raised, but guess what, I don’t mind disagreement. They don’t have to agree with me and I
don’t have to agree with them. What I wrote to Mr. Wilderotter about was not
disagreement over the statement, “Successfully
getting people out of wheelchairs,” but that this statement is misleading,
spreads false hope and miseducation, and makes people think that cure is much
closer than it actually is. In the end, their message said, don’t worry about getting involved in cure,
send us money and we’ll deal with it as we’re already getting people out of
their chairs.
This
is the wrong message. I hope CDRF does more in the future to involve those of
us in chairs because I think it will help us all get closer to cure, but in the
meantime, I’m happy that we MAY have sent CDRF a strong statement against wild
comments that do nothing to bring us closer to cure.
Thank
you Mr. Wilderotter (and I really do mean this).
PS. I spent some time this morning removing Bob's accusatory comments and the responses that others have made because they are pissed off with Bob's unending off topic comments about Dr. Wise Young.
From now on, false and/or off topic comments won't be allowed and this will stop the mean comments against Bob and his son (who doesn't have anything to do with this).
I understand that this is an emotional topic, but it gives no one, not even Bob, the right to make statements that they cannot back up.
PS. I spent some time this morning removing Bob's accusatory comments and the responses that others have made because they are pissed off with Bob's unending off topic comments about Dr. Wise Young.
From now on, false and/or off topic comments won't be allowed and this will stop the mean comments against Bob and his son (who doesn't have anything to do with this).
I understand that this is an emotional topic, but it gives no one, not even Bob, the right to make statements that they cannot back up.
