Dear Pamela,
I'm moving to the state
of Washington and very excited about the move! The weather so far has been really
nice, but then again I have only been here a short time so far. We have 1.5
acres of land, plus a front and back yard!! The dogs love it! It is a big change
from California, but I think I could get used to it. They have theater here
which is a HUGE, plus Celtic music that I love! However, I have heard lots of
warnings about rain in the winter and wondered if you have any the tips for
dealing with rain and wheelchairs.
Sincerely,
Not wanting to sport
the Drenched Rat look
Dear Undrenched Rat,
Wow, Washington is quite a
move, but I've heard it's beautiful there. I wish you luck with your move and
new life and can pass on a bit of advice that I gained from 10 years of living
in Oregon: get yourself a big rain pancho and practice how to put it over you
completely without getting it caught in your wheels. You are definetly going
to need! The trick I learned is to hang it over the back, BETWEEN the handles...that
keeps it out of the back wheels. Oh, and be sure it's not hanging too far forward
or it will get caught in the little wheels and pull you forward. You didn't
mention if your chair is a power chair or a manual chair. If it is a power chair,
be sure to cover the control box with a plastic bag when you go out on rainy
days; water can get into the electronics and cause you to do circus tricks,
which I assume is not your intention. As far as tracking water and mud inside
buildings, avoiding it is almost a hopeless cause, though spinning several times
on a door mat before enterring does help some. Your best bet is to find ways
to avoid the muddy paths in the first place.
Take care,
Pamela
Dear Pamela,
My first love is working
in the area of access to the arts for people who are disabled. I have drafted
a manual on Audio Description, one area of expertise that I have. I don't know
how to proceed with it and I doubt there will be much of a market if I were
able to get it published. I also was involved in a seven year program at a museum
to work with hands-on collections, touch sculptures; the program also provided
opportunities to create art, sculpt with clay and work with multi-media. I'm
looking for suggestions on how to get my manual published and how to link up
with theaters and/or museums to work on creating access. I want people to know
that they can access cultural venues and their offerings. Would this require
a particular college degree? Do you have suggestions for publishing a specialized
manual that will most likely have a very low demand? Once published, I believe
that approaching theaters individually is what I'd will have to do. Do you have
additional suggestions? Thank you for sharing your suggestions, time, and expertise.
Best wishes!
An aspiring writer
Hi, Aspiring Writer!
Your manual sounds great and it is definitely an area where people need some education. I have just written and self-published a book myself, on artists with disabilities, so I'm in the midst of trying to sell it. My book has a wider audience than yours would likely have, and mine is selling very slowly. In other words, don't expect it to fly fast and make money, but it can sell. I self-published mine, using a very wonderful book by Fern Reis as a guide. I have set up a website for distributing it and have used it and email notices to groups as my main way of getting the word out.
You have two choices for self-publishing, and anything in between would be useless (in my opinion). Either publish down-and-dirty to minimize your outlay of money and expect to sell less, or go professional and let the book look good enough that it will sell. I went the professional route and have actually had sales to people who knew nothing about disability, but liked the look of the book. I used a professional graphic designer to help me with the book and went with a nice looking finish on the cover. This all cost more but will help me sell more and will, more importantly, get my words to more people. I think my book is a very important book, as is your concept.
As far as getting the word to museums and potential users, my advice is join their organizations so that you start networking. Also, attend their conferences so that you get their mailing lists. Conference fees can be expensive, but you can google to find appropriate conferences, read what they plan to do and contact them to see if you can wiggle your way on to a relevant panel. Of course, this takes lots of long-term planning, but you can start building these connections while you are pulling the manual together and getting it published. I'm talking about the professional non-disability organizations, though you can also join disability artists' organizations if any are in your area.
Hope this helps!
Pamela
P.S. My book, "Moving Over the Edge, Artists with Disabilities Take the Leap," can be purchased from <http://www.mhortonmedia.com/>
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Dear Pamela,
How can artists on SSDI get paid as professionals and still keep their benefits?
TABitha
Dear TABitha,
That's an excellent question for which I have some answers,
but it's a very complex question in that people's circumstances vary greatly.
The best and most comprehensive (and actually somewhat understandable) resource
I have found is the "Red Book on Work Incentives: A Summary Guide
to Social Security and Supplemental Security Income Work Incentives for People
With Disabilities." Although it is in the process of being rewritten
to reflect changes since the passage of the Work Incentives Improvement Act
of 1999, it still has a lot of good information about other work incentive programs.
It's available free by writing to: Social Security Administration, Public
Information Distribution Center, P.O. Box 17743, Baltimore MD 21235; or by calling
410-965-0945; or by faxing 410-965-0695. Many Independent Living Centers
have some copies on hand to give away.
Another thing to consider if one is a consultant or gets
paid irregularly (i.e. artists), but not as an employee, is that one can file
as Self-Employed. This allows one to deduct all business expenses from
monies earned, including depreciating things like computers. After deducting
all expenses, the left-over amount is divided by 12 (as in 12 months) to determine
the individual's monthly income. If this falls below $85, then benefits
are not affected at all.
You can also get more information at the following website:
www.ssa.gov/work
Hope this helps,
Pamela
P.S. Another artist I know has suggested that one solution might be for them to spread earned money out so that it's less than $200/month (still the amount of income you can receive and not have it affect SSI payments?). And, talking to a benefits counselor at a local independent living center will give information about how to "spend down" earnings with "income related work expenses" ("'IRWEs"). Using this method, once can earn over a thousand a month and not have their SSI decreased. It does mean keeping good paperwork and records, and dealing with Social Security a lot, because the left hand doesn't know what the right hand is doing -- one will get letters regularly saying that they are earning too much money and are being cut off, but it all gets settled when they go in with all their documentation. A nuisance, but it does work.
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hello Pamela,
Here is a question for you... if a disabled person, who uses a power wheelchair
and an AB both leave the North Berkeley Bart station at the same time, and neither
one uses either public or private transportation which one will get to Telegraph
Avenue first to see the street vendors?
Yours,
Bri
Dear Bri,
This page is "Ask Pamela," NOT "Ask Pamela a Trick Question!" But, I will do
my best to answer, though you left out a lot of information that I need to make
a 100% accurate assessment of the situation. For example, what is the make and
model of the power wheelchair and how recently were the batteries replaced?
Does the AB [able-bodied] like animals and tend to pet every dog and cat he
or she sees? Which direction did they each head out? My final answer?--I am
going to assume it is Sunday and so....the AB gets to Telegraph first, because
the person in the wheelchair stops to watch the drummers on Sproul plaza.
Thoroughly,
Pamela
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P,
Why is it... that some ppl insist on patting a w/c user on the head as if we
are perennially 5 years old??
B
Dear B, To completely understand
the answer to this mystery, first read the answer to the above question. Then....
I shall explain... you see, 90% of the people who have had to use wheelchairs
in this life were dogs in their last life. Somehow, others know this intuitively.
(NOTE: This does not apply to those who have had to temporarily use a wheelchair
due to an injury caused during a sporting activity...i.e.skiing, football, bowling,
pregnancy.)
You're welcome,
Pamela
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Pamela Walker, author