There are times:

Wow, so I went to an annual dinner for the Jewish Federation tonight,
primarily as an advocate to speak about issues that are important to me.
I handed out cards, I introduced myself, I made quite a few networks, and it was generally good.

Then, I decided I'd try to network with one more person.
It's that LAST person that always makes the difference, right?
So, he works for Henrico County Board of Supervisors.
I walked up to him and began advocating for the Care Van.
At some point, he said Henrico County already gave too much money
to the CARE van, and I said I appreciated their contribution, but the organization
I am working with is trying to collaborate with other counties to ensure that
everyone pays an equal part.
Then, his retort was "I don't care if you appreciate it. I care if THEY appreciate it (the riders)"
I responded that I understood that.
He told me I didn't because I didn't know what it felt like to have a disability...
I responded that I have been denied from CARE van (getting a membership/rider card) several times.
He then asked that question... "do you have a disability?"
I responded that I did and explained how it impacted my life.
"You sure are pretty to have a disability..."
I took a step back, and I couldn't come up with an appropriate response
that would not get me kicked out of the event.
I handed him my business card and shook hands, and I was pretty much done.
Then, he got 5 coworkers around him and asked them if I "looked" like I had a disability.
Usually, I can respond.
Usually, I can go off about neurological disabilities, "invisible disabilities", you name it.
Tonight, all I could do was take a step back.
 

Forms of Love?

This post has nothing to do with disability,
even though I know it affects my way of thinking at times.
It's hard for me to rationalize this one in my head,
but I believe that there are different forms of love.

I find myself saying it often, and I know, probably too much to some, but
I think it's true.
I've been trying to wear my heart on my sleeve and not hide it as much,
but when I hear others telling me to avoid saying how I feel, it's strange to
convince my brain.

Scribing Suggestions

Through my work, I've had the opportunity to scribe for several self advocates.

For those who are unaware of what scribing is, it is carefully listening to self advocates
and recording their thoughts.

Usually, this is done because a self advocate might have difficulty getting their own thoughts on paper.

As I watch others try to scribe, and as I speak to the self advocates that I work with, I have learned that it's not as "common sense" as I thought, and I've been asked to write down a list of suggestions for those who are scribing (with notes also to those who are being scribed for).

I'm posting it here with hopes that it is useful.
If this is useful to you, please send feedback.

In Their Words:

Only write down what the individual is saying to you.

These are the individual’s thoughts, and it’s important to capture

what they are saying to you.

What’s the Message?

Focus on the message, not the individual words. Edits can be made later on if needed to change words.

(This is a note for the individual who is being scribed for)

Say It!

There is nothing “too stupid” or small to write down. Your thoughts are important!

(another note for the individual who is being scribed for)

What Did You Say?

It is fine to ask the person to repeat themselves. If you need help understanding them, ask for help!

Take the time to understand the message and record it accurately.

Review It!

Always re-read what is written or have the self advocate review what is written, so that they

have the opportunity to make changes or edits.

Suggestions:

Remember that you scribing for a person might not be what they need.

First, allow them to be independent by showing them other ways to record their thoughts such as by using a computer.

Side Note: I can't express how important it is to take the time to scribe correctly. Many self advocates that I have worked with have told me that they need to hurry up and finish their thoughts because that's what they are usually told to do. In many instances, I have been scribing for a self advocate and have to remind them to breathe because they are speaking so fast.  This should NEVER be the case when you are scribing for an individual. It's so important to give the individual that you are scribing for enough time to express themselves.

Find Your Sense of Belonging

It's strange how that goes.
Last week at I'm Determined, I felt like I fit.
There are SO few places that I feel like I completely fit in.
I thought about it during the drive home.
I wish I had known about things like that when I
was in high school.
I'm Determined didn't exist, but I wish I had known about
a program like it.
Then, yesterday, I finished the training for staff for Youth Leadership Forum.
I love it. It's a huge passion of mine.
I'm a small group co-facilitator, I'm coordinating the Resource Fair, and
I'm speaking for one of the sessions about what I wish I knew when I was in the Delegate's shoes.
I love it, but I leave feeling as if I still don't fit.
I think I just try to do too much,
I think I think too much about it and try to hard.
I never know when it's enough.

It's progress... for me

It's funny how the small steps seem like such a leap.
When I was little, I would get frustrated, and people used to say
"you'll get there, and when you do, it will be a huge accomplishment."

Tomorrow, I'll take one of those steps of independence,
and I realize that each step is a step all on it's own.

Driving was a huge deal for me.
NEVER thought it would happen.
There were bumps and bruises and hiccups, but it did.
Tomorrow, I'll be up bright and early.
I'll be driving about 2.5 hours for a conference.
I know, it doesn't sound huge, but this is the longest trip I've made on my own.

There have already been hiccups,
people who tell me it will not end well,
and issues with the car,
but all I can do is try.
I guess that's something I've always had to do...
just keep trying.

There are nights when I don't want to anymore.
However, one of the few constants right now in my life
is the fact that I will give it my all whether I want to or not.

If I were in your shoes...

I had a team meeting today to prepare for Youth Leadership Forum.
My supervisor was talking to me and my coworker about what we would
tell the YLF delegates (rising Juniors and Seniors in high school as well as post- graduates) what
we wished we had known at their age. Tonight, I can think of a few things, and I know I'll build on that list as time moves on.

List

1. Your support circle is literally what can drag you out of bed
each morning and keep you going through the night.
Hold the people you love close to you.You don't know how long
you will have them for.

2. Some fights, you might just have to decide to back away from
until another day. Don't let that get in the way of feeling proud of
who you have become.

3. Independence is possible. Don't let anyone tell you it's not.


4.  Modifications may be necessary, and that's alright.

5. Don't brush your abilities or your disabilities under the rug.

6. You learn as you go. Mistakes teach you more than your successes sometimes.

lifelong learning

One of my favorite parts about the job
I am at now is that I am learning something new
from somebody every single day.
I have the privilege of getting to work
with amazing individuals on a daily basis.
These individuals are some of the most driven
and caring people I have ever met, and they also
happen to be parents of children who have developmental
disabilities or adults (self advocates) who have developmental disabilties.
I have the chance to work with each group of parents and self advocates for
8 months, facilitate them in learning advocacy skills,  and watch them become better
advocates as they learn about the disability system.
(http://www.vaboard.org/policymaking.htm).
Each of the Partners in Partners in Policymaking works on a final project
from November until May.
Many of these projects involve time, scribes, phone calls, e mails, letters, and A LOT of patience.
The main requirement for the project is that it benefits the community in some way.
Tonight, I promised one of the Self Advocates that I would post his website,
 http://moreservicesinthecommunity.com/#

which also contains a link to his petition.
The petition focuses on having services (such as speech therapy, occupational therapy, and physical therapy) in the community for adults instead of in the therapy gym.
He hopes to send the petition to DMAS, and he has already made other strides to get involved
in his community.

This is just one of the many projects that our Partners have focused on during Partners in Policymaking, and this Self Advocate is just one of the 50 I have had the honor of working with
over the past 2 years.
A lot of individuals who have gone through the program state that it changed their life.
The truth is, they have changed mine.

Fast Paced Much?

Things have been moving so fast right now that it seems unreal
that I'm still in the same place.
This weekend, though I was busy,
I realized how much I need to SLOW DOWN and appreciate the simple things.
While working and trying to take care of things,
I realize it's the time with my friends that takes the toll.
I know most people don't see this blog,
but it's the people in my life that count,
and I want to take the chance to
spread the love to the people who make my life wonderful.

Miss Independent?

They don't get it.
I have these conversations with my parents about
independence all the time.
The ideal for me at this point would be to move
in with two other friends who both have disabilities.
We'd be a different kind of family, but we're a family nonetheless.
People are this stage now where they know I want independence.
Yet, they keep telling me how much "physical support"I am going to need,
and how my friends can't do that.
I keep telling them I'll make it work.
I'm tired of the fight.
I want independence, but I'm at the point
where I am just giving up on it.
This topic is so close to me...so much what I want, and yet,
I'm willing to just give up the fight right now.

I'm sorry this blog has gotten to be so depressing...
thinking of discontinuing it.

Confirmation

So, I've been hearing for so long that I can't be a self advocate and a professional.
I never know what to say to that...

Then, today, I confirmed that I'll be on a committee of self advocates for Partnership for People with Disabilities.

It makes me really nervous to put myself out there,
but as someone told me this afternoon,
it might just be the universe telling me that
something else is possible.

Off to bed, or at least to lay there (nocturnal as I am)


<3

Dear Insurance Company:

Dear Insurance Company:

If you keep denying my medication and refuse to let the pharmacy
refill it, I guarantee you a hospital stay is going to be more expensive.
I don't pay out of pocket EVERY month in order for you to deny necessary medicine.

Public Comment regarding DOJ agreement

This was the public comment given two weeks ago regarding the Department of Justice Agreement to close 4 of 5 institutions in Virginia. There were two DOJ representatives there, and I was shocked that one of them recognized me from a previous conference in August.

Good Evening,

My name is Rachel Loria.

I am from the City of Richmond.                      

My Delegate is Jennifer McClellan, and my Senator is Donald McEachin.

I come to you tonight as a Self Advocate.

While it seems relatively easy to say most days, I guarantee you the journey has been far from easy.

My parents fought for 10 years to try to get an appropriate diagnosis… a correct diagnosis. After 10 years, Doctors continued stating characteristics that I portrayed that reminded them of traits associated with multiple different disabilities.  With no diagnosis in sight, my parents and therapists taught me to compensate for the weaknesses I have and to work to overcome them.  I still work on this every day.

Each milestone that professionals questioned if I would make, I did.

In high school, I was rejected from one private school due to disability and graduated from a different one with honors. While several teachers told me to go to a community college because they thought a four year degree would be too difficult, I graduated in four years  while working and continued towards my Masters in Education (also while working), which I walked with last May. I was told to go to DARS because I would only find supported employment. Today, I am working part time and doing a job I love.

I’m not here tonight to tell you what I have accomplished.

I’m here tonight to say that if I hadn’t been given the chances that people gave me,  I would not have gotten here. This is more a testament to them than to myself.

With that said, people who have disabilities need to be given equal chances towards all of their goals, specifically tonight, independent living.

I say equal chances because if you ask an individual who does not have a disability if they want to live as independently as possible or in an institution, they will, more chances than not, choose independent living.

Independent living is something I am still working towards, and I know I will need support.  

I am not just here for myself tonight though. I work with self advocates and parents on a daily basis, and I am fighting for others who also want to live independently and may or may not need support.                     I come to you tonight to encourage you to follow through with the DOJ agreement and give individuals with disabilities a chance to live as independently as possible. DO NOT let their diagnosis or labels or traits define their futures.

I thank you for your time and for giving me the opportunity to speak with you tonight.

Tale as old as time...

Time and time again,
I have had people close to me say
"you can't be a self advocate and a professional in the disability field."
 I get that message so often.
It's frustrating because I don't even know the truth anymore.
I'm getting into this field slowly, and I never know
which hat to wear when I'm in the field.
I guess this blog is my journey.
It's my attempt at being honest,
cause I don't know if it's possible to be a
Professional in the disability community and be a self advocate at the same time...