Friday, September 18, 2015

TSA: NCIL Experience



In my previous TSA posts, I talked about travel accessibility and what to prepare for. What happens to me and my wheelchair when boarding a plane? And what do I need/seek when booking a hotel room? But I have yet to give my experience of the reason for my trip, National Council on Independent Living’s (NCIL) Annual Conference on Independent Living.

This year’s NCIL conference theme was “Generation ADA: Rise Up!” [– in addition to, of course, celebrating the monumental 25th Anniversary since the signing of the Americans with Disabilities Act.] By “Generation ADA,” NCIL is referring to the youth and young adults (age 27 or younger) with disabilities who are active within their communities. Those who are fighting for full inclusion and the equal but not separate rights of the disability community.

To promote the power that, we, the young people of today hold, NCIL (as other national conference hosts are doing, e.g. APRIL) stands even taller with the phrase, “Nothing About Us, Without Us!” for us; allowing for funding and mentorship was accessible to the youth as they plan and pursue an age-appropriate disability rights/independent living conference of their own. This group of empowered, disabled youth that coordinated the conference and address community initiatives, are known as the NCIL Youth Caucus.

Having been my first year being a member of NCIL, let alone the Youth Caucus – and only to know of NCIL’s great work, by word of mouth – I didn’t really have too high of expectations. But, next year, I will! The atmosphere set by and for the young people amongst the seasoned advocates, was beyond inclusive, encouraging, and effective. Here’s why:
  • ·         At least 80 youth attended;
  • ·         About 60 were from Japan (Yes, JAPAN!); 
    •  They’re starting establish Centers for Independent Living too;
  • ·         Universal accessibility, intersectionality, and interdependence were all thoroughly addressed and taught appropriately
    • No one was excluded;
  • ·         Collective efforts advocated for a more youth inclusive position on the full council board, which was filled that week;
  • ·         Youth lead/participation throughout the entire NCIL conference was strongly encouraged; 
    •  We were at the front of the march to the Capitol;
    • Provided our testimonies to board members;
  • ·         And the more youth engaging activities were integrated into the general conference agenda, not only promoted separately; 
    •  There were multiple paths that each workshop was provided to focus on. Youth/transition was a track, but not the only one! 
Knowledge, hands-on experience, and comradery. Need I say more? If you ever get the opportunity to become a NCIL member and can participate, go for it! For more details on the 2015 NCIL conference, click this wrap-up link. And keep an eye out for any changes on the P2P Roadmap to Success for more local resources and opportunities for young people!

Tuesday, September 8, 2015

My ABC's to Managing PCA's



"I'm moving to Georgia!"
"What? Why?"
"I was offered a great job in Atlanta."
"Oh… Who is going to take care of you?"

That's basically how the conversations went, whenever I shared that I was moving to a state where I didn’t know anyone, and don’t plan to move with anyone. This opened my eyes to other important factors to consider as a person who needs to be comfortably reliant on others to be independent.

Who do I know that I trusted enough to work as my caretaker/personal care attendant (PCA)?

Where do I find people who work as PCA’s, if I didn’t know anyone?

How do I handle this responsibility?

The fact is, I need support every day in order to pursue my daily responsibilities (i.e. going to work to earn an income to maintain self-sufficiency.) Which means that another human being is heavily involved in my life – personally and professionally. A, or multiple, PCA’s. Their job is to physically help me with the anything known to be day-to-day activities (e.g. transferring for me to use the bathroom, transferring me to use the shower and then taking a shower, meal prep, putting on and taking off my clothes, etc.) My job is to be a proper employer. Because this involves my care, I need to be included and take lead. How do I manage PCA’s a.k.a. my employees? Here are my ABC’s:
Image description: a green A building block placed
on a blue B building block and a red C building block.

A – Assertive. I have to assertive with what I need accomplished, and how to do so by my preference. E.g. If I need to be transferred a specific way, then it must be done, to avoid harm or damage to anyone involved.

B – Boundaries. It is very easy to become friends with a PCA. Especially, if so much time is going to be spent together. But if I am working with just one PCA at home and work, I address how I am different in both environments, and if they can do the same. If not, a shift/schedule change is pursued. There are certainly more realms in our lives. Having more than one PCA to share those times is less stressful as an employer.

C – Communication. The communication lines must be open with a PCA. I always ask, during the first meeting, “is there anything you have no tolerance for?” because I do not want them to feel as though they have to do it, that their paycheck depends on it. That, then, brings in passive-aggressiveness and tension. Having regular conversations to give each other feedback is something I practice too. They may not like the way I said something, or asked for help. During this open dialogue, such concerns can be discussed

I guess, it’s more a matter of interdependence to be independent. Everyone has their skills and deficits. Therefore, we all rely on each other equally in one way or another.