I've thought about the
question "how do I want to be treated?" many times. But it occurred to me that that's actually an
easy question to answer: I want to be
treated like myself, like the individual I am.
I don't want people to see me come into a room and think "oh,
there's Tamar, and she's got all these problems." I want it to be "oh hi Tamar, nice to
see you." The real question to ask
myself is:
When do I need to speak
up, what do I need?
The answer to this
question can vary a lot from one person to another, one situation to
another. People with visible problems,
for example wheelchairs, or casts on body parts deal with very different
scenarios regarding help and self advocacy.
Personally, learning to advocate for myself is a process, a learning
experience. For me right now, there are
four things that tend to come up regarding outings (which is when issues come
up the most):
1) Transportation
2) Food
3) Taking a break
4) Seating
I should, and want to be
the one, to make choices and decisions about what works for me. Some may disagree with this, but I think in
order to have a measure of independence, a lot of it is up to me. This is the reality of having a disorder that
isn't visible, AND that's difficult for others to "get". Some outings I end up not participating in,
some I participate in and rely on my coping skills (which I'm constantly
learning), and sometimes I have to speak up.
I might discuss something with my therapists, but in the end, I have to
decide. It would be nice if people knew
what I needed, but I've come to realize that for me that's not realistic. People are not mind readers, and I am the one
living with my disorders. My vision
disorder is somewhat unusual, and I'm the one with a restricted diet, so I have
to speak up about what I need, for what does or doesn't work for me.
I don't see myself as
someone defined by my medical conditions, my disorders are not who I am, but I
do recognize that my medical challenges have a real impact on my life. I think one of the best ways to counteract
stigma is to ask for what you need, and do what you need to do, as long as
you're appropriate. We all want to be
independent; I definitely have a very strong streak of independence, and I want
to do as much as possible on my own. An
obvious example for me is driving. I
can't get into a car and go wherever I want to go. But I can plan with a family member, or order
a taxi, to get someplace. I use a
variety of hi tech stuff to give me access to the written word. So acknowledging my limitations and getting
help actually makes me the opposite of helpless. I have to remind myself of this sometimes.
When I think about doing
an outing, depending on what the outing is and where I'll be, I may need to
think about where I can take a break if needed.
Sometimes I can figure this out on my own, and sometimes I need to talk
to someone. An example of when I need to
speak up is attending a high school theatrical production, because where I sit
is important. For the occasional times
when a meal is involved, I find out who to talk to about my dietary
restrictions. If I'm in a social
situation, I might sit down when others are standing, and not behave as if it's
an issue. When I attend adult education
offered by my congregations' Sunday School, I like that Rabbi Adam always
offers me any written material he's prepared.
I take the handout, put it under something so that I'm not constantly
staring at it, and occasionally look at it.
I have to advocate for
myself at home as well. In addition to
noise, movement can be difficult for me, so I might ask one of my daughters to
stop pacing the room while talking with me.
Following them with my eyes gets difficult, or looking elsewhere and
then back at them, so I ask them to please stand still. I'll ask Ron while we're sitting and talking,
to stop moving his leg. Sometimes Leena
or Cara want me to do something or look at something, and we have to plan when
it will happen. We may also have to plan
a bit how we'll do it. I've given
explanations to Ron or the girls sometimes about a request I make, and
sometimes I talk things over with them. It's
a work in progress with them to understand my particular needs, even as I
figure things out.
I always hope that some
people will make the effort to try to understand, but one of the most important
things people can do is recognize when they don't really "get"
it. Presuming you understand something
when in fact you don't usually leads to problems, and if you admit you don't, then
there's room to learn. It's frustrating
to have disorders that are hard to explain, and hard for others to
understand. I'd rather have problems
that are at least easier to explain, and understand, but I don't. I hope over time, as I continue to write, and
continue to advocate for myself in various situations as I slowly make
progress, that I'll get better at explaining.
I'm grateful that for the
most part my family is accepting, and doesn't complain, occasionally asking
questions to try to understand. I'm also
glad to belong to the Kol Hadash community where I can still participate in
some things. Whether at home or out, special
requests or accommodations need to be met with compassion, whether the reason
for the request is understood or not.
Sometimes politely asking the reason is OK, though I feel the person
being asked is not obligated to answer if it makes them uncomfortable. Being comfortable talking about whatever
you're dealing with varies from one person to another, one situation to another.
As I go through my
journey, I think about those I interact with.
To me there are what I think of as degrees of understanding, from those
I live with, to those who know me to varying degrees, to just anyone I interact
with. When I'm with someone who has some
understanding of my limitations, it's nice if they remember something from a
previous situation, and "get" it.
I also fully recognize that no
matter what, there are going to be challenges that come up, and I will deal
with some better than others. Figuring
out how to advocate for myself will always be a work in progress. But I need to keep doing
it because if I took away the times when I speak up, and everything I try to
do, then I'd really be in trouble. Ultimately, I want to be able to do things, be
with people and be myself.
