So, We Meet Again?

A few of you remember a post I made last year.
It's the second most recent post on this blog (shows how often I use it), but I wanted to follow up.

At times, I think part of being an advocate, make that part of being a person in general, is not backing down.

With that, I'm going to the Henrico County Board of Supervisors meeting tonight, where I will once again deal with the character that was described in my "There are Times" post.

I will be with my fellow advocates from my DRIVEN team.
We are a tight group, and we support each other 100%
If he dares to make a comment as he did before, my team members
and I will call him on it, as well as bring up the past conversation.

So many times, people think we are just going to back down.
I assure you, we are stronger in numbers, and we will not be backing down ANYTIME soon.


UPDATE:
Tonight we learned that the CARE bus will NOT be cutting services or hours in Henrico County, which was the reason we went to advocate in the first place.
Unfortunately, the Board of Supervisors could not answer our question without making us look like fools (telling my fellow board member that he was "reading the wrong newspaper", cutting me off, and actually laughing at us mid public testimony), but in the end, people from the general public met us in the hallway wanting more information and disgraced with the way we were treated.

Loneliness?

I promise, I really have not meant for this blog to be depressing, which is why posting is not as frequent, but it's just a phase of "stuck" that I'm in right now. Consider that your warning.

I've heard so many times that people with disabilities are more likely to live a "life of loneliness."
Those who know me and know where my life has been in the last few months know that I've truly been trying to combat that stereotype. Maybe, I've been trying a bit too hard.

Don't get me wrong. I've heard the professionals talk about support circles, the importance of friendship, involvement in the community, etc... and I will support their messages 100%
My issue is that I can't seem to figure out how to balance.
I can't seem to put myself out there JUST enough with the RIGHT people.
I either completely close down, or I open up too much.

I have a small support circle, and while I constantly feel as if I can't spend enough time with them,
I am realizing more and more often who is a part of that circle.

I promised myself that I would share a full journey on this blog, and that's what I plan to do, judgement or not.

The past 5 months have been an interesting time.
I'm 27, and since I was 21, I have had this desire to "settle down"
but at the same time a desire to be "adventurous".
I thought I had found it.
 I had found someone where I could be settled and adventurous.
I was on cloud 9. Make that 9 and a half
I made moves of independence I didn't think possible.
He lived alone in NoVa. I live with my parents.
I would make the 2 hour commute each way to see him.
I opened up in ways I didn't think I could.
I had a guarantee from him that he was in it for the long run.
I learned that in the end, I had the commitment component, and I was willing to do
whatever I could to make the relationship work, but he wasn't.


Honestly, I think it came down to understanding and compromise.
He said the relationship didn't work because I was living with my parents.
Despite my attempts to be independent, to make that drive to him every time, I could not be independent enough.
I feel like people just don't seem to get the whole disability component.
I had the discussion with my friend while I was in this relationship.
She asked  "Does he understand how committed you are to your job? Does he get how consuming it can be?"

I said he did. I said we talked about it.
I think he did understand the job component, but I think there was a part of him that never understood  my disability.
The disability of "undiagnosed"- It's hard to explain a disability to someone when you don't completely understand it.
When I became overwhelmed with too much information, at times he would just get frustrated.
When my ankles gave out on me or I had difficulty processing something, he would just shake his head and laugh, sometimes make a joke about it.
I know, people deal with disability differently, but I just don't think he got it.
He thought I could control it.
As I returned to his apartment two months after we broke up to
grab the very few things I left there on a continual basis,
the idea of loneliness just seemed to be that constant message in my head.
As we talked, trying to get closure, according to him,
I still somehow felt safe with him, despite everything that happened (no details unless asked specifically).

this is pointless. done here.

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.