Sparking Success After Vision Loss

Blindness, Low Vision any degree of significant vision loss occurs for different reasons. It impacts people from all walks of life at various ages.
My guest today, Susan Lichtenfels, President of the Pennsylvania Council of the Blind (PCB) says; “None of our experiences are ever the same, but they’re similar.”

Looking at people adjusting to vision loss, it’s apparent there are also similarities in making that a success.

Hear all about SPARK Saturday, an event sponsored by the Pennsylvania Council of the Blind to light the fire in anyone impacted by vision loss. Plus a look at how PCB can help you attend.

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TR:

Welcome back to another episode of Reid My Mind Radio. My name is Thomas Reid. Not only am I producer & host of this podcast, but I’m the target audience, a person adjusting to becoming Blind as an adult.

While I’m no longer new to blindness, I do think I would have appreciated having a podcast like this one during those early years.

In some ways I did. I was fortunate to have other people with all degrees of vision loss in my life. People who are Blind, living productive lives on their terms.

We’re going to get into a bit of that and how it can be of help to you or someone you know right now adjusting to vision loss from low vision to total blindness.

First let me drop this on you like…

Audio from opening music (Wow!)

Audio: Reid My Mind Radio Intro Music

TR:

Early on in my adjustment I became involved in advocacy. It began locally and grew to state and national after helping to form a chapter of the Pennsylvania Council of the Blind or PCB in my county.

Attending my very first PCB state Conference & convention made a big impact on my life. It gave me the chance to meet people who both indirectly and directly taught me a lot about blindness. It was extremely important to my personal adjustment.

Today we’re going to take a look at some of what PCB has to offer those adjusting to, experiencing or impacted by blindness or vision loss; including an event that many of you may want to attend. Plus opportunities to help you do that.

Allow me to present a friend of mine to help guide you on this tour.

SL:

My name is Sue Lichtenfels and I am currently the President of PCB. But when I’m not wearing that hat I am a wife, I am an Advocate and I am a person with a disability, actually 2 disabilities. I am a mother of a soon to be 8 year old.

[TR in conversation with SL:]

8 years old already. Wow, I’ve known you for a while Sue.

Sl:

We started on the board at the same time. In 2007 we were elected and we started serving in 2008.

[TR in conversation with SL:]
And how long were you in PCB ?

Sl:

I only joined in 2005. We really are like right around the same… (laughs)

[TR in conversation with SL:]
Yeh! So was your first conference 2006 or 2005?

Sl:

My first conference as a member was 06.

[TR in conversation with SL:]
Yen, same with me!

TR:

We’re going to start with advocacy, but let me first be an advocate for this podcast.

Sue has agreed to come back on the podcast to share more of her story.

SL:

We’ll sit down and do another interview.

TR:

I’m just saying! It’s on the record now!

Self-advocacy is often a gateway to becoming an advocate for other. For Sue, it started in college.

SL:

No one’s there anymore to kind of be a buffer between you and your professors or the learning center that’s helping to adapt your materials in the format you can use.

#Goal Ball

TR:

While at the University of Pittsburg, Sue was introduced to the sport of Goal Ball which truly made an impression on her.

SL:

It’s a sport with three players on each team played on an indoor court and you kind of roll a ball the size of a basketball. It’s got bells in it and you roll it in a bowling motion and then you slide and use your body to block the ball from going beyond your team into the goal.

TR:

It may sound like just a game, but Sue grew up loving sports and always wanting to play and compete.

SL:

I was never allowed to. So when I found this sport, Goal Ball, I really , really loved it.

TR:

Sue became really good at the game. In fact, she played for the USA team in the World Championship in Canada.

SL:

And then I was in this car accident and lost the use of my legs.

TR:

This appears to be what really activated that inner advocate.

SL:

I had this opportunity to finally find a sport, find something I could be athletic and involved in so I wanted to do work and do advocacy get other kids that are mainstreamed the opportunity to be more involved in physical education and recreation.

TR:

Sue applied for and received a fellowship which enabled her to start a nonprofit.

SL:

Called Sports Vision, to create opportunities for children. I went out and spoke to Physical Education Teachers, IU teachers to advocate on behalf of getting children more involved in physical education.

[TR in conversation with SL:]
When you said that you weren’t allowed to was that a parental thing or was that a school thing where you weren’t allowed to participate in sports?

Sl:

I wasn’t allowed to participate in sports for fear that I would get hurt.

TR:

Children attending schools for the Blind had adaptive sports and recreational activities. Unfortunately, fear often caused children like Sue who were mainstreamed to be kept on the sidelines and excused from physical education and sports.

SL:

Fear was on the side of the parent who was afraid that their child was going to get hurt. The fear is also on the side of the district that doesn’t want to take a chance in getting sued because a child did get hurt.

[TR in conversation with SL:]
I got you, so it’s not like you had an advocate at school or at home kind of saying hey she wants to play sports, let her do it. So then you became that advocate in Sports Vision.

Sl:

Correct.

[TR in conversation with SL:]
Cool!

TR:

Also cool was when Sue brought her talent and persistence to the Pennsylvania Council of the Blind. Already familiar with running her own nonprofit and filling multiple roles, she took on many within the organization before her election to PCB President.

SL:

Fundraising, membership, awards, conference program and planning I’ve pretty much served on every committee or team within the organization.

Since 2010 I’ve been Editor of the PCB Advocate which is our quarterly newsletter. In 2007 I was elected to the board of PCB and been serving as a member of the board ever since.

# Challenges of Leading Membership Org.

Currently Sue is winding down the last months of her second and final term serving as PCB president.

Just the right time to ask her about the challenges of leading a member based advocacy organization.

First, challenges of the membership model itself.

SL:

Engagement.

When you’re a member based organization there is a micro way of thinking. You tend to gear your work towards the people that are in your organization. And we spend a lot of time offering ways to try and get our members more active when the reality of the situation is that our mission is to promote independence and opportunity for all who are Blind or visually impaired.

TR:

Second, advocacy

SL:

I think when many people hear the term advocacy they automatically associate it with legislative, policy those types of issues. They don’t recognize it for all the rest of the issues that need to be addressed that maybe aren’t necessarily achieved through writing a Legislator.

[TR in conversation with SL:]
Such as?

Sl:

Educating the public about the abilities of people that are Blind or visually impaired. The peer support that is necessary to take someone from not having any idea about what their own capabilities are and providing them with the ability to listen and offer them guidance.

That’s advocacy too.

TR:

So, how exactly does PCB offer support?

Here’s three ways.

Audio: One!

SL:

Peer discussion calls – these are organized usually around a specific topic. We have a conversation around issues such as travel when you’re Blind or visually impaired. We talk about our own experience , we share our stories and we provide a forum where we all learn from one another.

Audio: “Two!”

SL:

Peer Mentors – A lot of times the best way to cope with losing vision is to talk to someone who’s been there. None of our experiences are ever the same, but they’re similar.

TR:

Through their network which includes people who span all degrees of vision loss, from low vision to total blindness, PCB has something else to can offer…

SL:
Someone to talk to them on a one on one basis and provide them with guidance and advice and support.

Audio: “Three”

SL:
Local chapters – throughout the state we do have chapters who usually meet on a once a month basis and these are people who are blind or visually impaired who are more than willing and ready to welcome those who are new to vision loss and to really provide that connection and that one on one in person peer support.

TR:

While the local chapters are obviously specific to the state of Pennsylvania, “One and two” the discussion calls and peer mentors are all open to anyone experiencing vision loss.

SL:

Some of the specific advocacy discussions might be Pennsylvania specific but there’s a lot of information that we share that’s blindness and support related that isn’t geographically specific.

If you or someone you know is an individual who has vision loss and who’s vision loss has occurred within the last five years, I encourage you to apply for our Adjustment to Blindness First Timer Conference Scholarship.

TR:

This is a full scholarship! It covers your attendance for the weekend. That includes your registration, conference meals and activities, hotel…

SL:

And it will also cover ground transportation to and from the conference. To learn more about the scholarship, contact the PCB Office at 877617 – 7407 or send an email to Leadership@pcb1.org.

TR:

But that’s not it!

Maybe you’re thinking, Thomas, I’ve been Blind for more than 5 years and like you I believe the adjustment process is an ongoing thing and I really would love to attend. Are there any opportunities to help me get there!

Well, yes! PCB has some additional scholarships that you can check out on their web page at pcb1.org/conference

And then there’s also a $500 merit award available this year, specifically for those who are Blind or Visually Impaired and currently enrolled in a vocational or academic program.

SL:

Or some type of professional licensure.

We’re actually going to award three individuals stipends to attend the PCB Conference. So the top three finalists for the Merit Award will receive stipends to attend which will include the hotel, travel, conference registration and meals. Once folks get to the conference, those three individuals, we will announce who will win the grand prize of the $500 Merit Award.

TR:

That’s a great opportunity! I’d love to see it go to someone in the Reid My Mind Radio family.

Whether you, a family member or friend is adjusting to blindness or low vision; the PCB conference truly can be the experience that you need in your life right now.

SL:
But if you can’t make the entire weekend, and you can only pick one day to come and join us, I really encourage you not to miss our Saturday morning presentations. It’s going to be amazing!

TR:

It’s going to be hot!

It’s called SPARK Saturday because we’re bringing that heat!

[TR in conversation with SL:]

What about you? How has your involvement with PCB impacted you personally?

SL:

You know I’ve been involved at the leadership level and involved in the work of the organization for so long, I’ve gained so many skills. So I mean I’m a much more well-rounded person with regards to blindness skills but also skills that are work and project related.

TR:

The result of actually doing the work?

Sl:

I have a lot more confidence now in my abilities than I used to.

TR:

That confidence extends way pass the work.

Last year Sue decided to write and direct a play for PCB’s post banquet entertainment.

She cast it with her PCB peers.

SL:

It’s just such a fun time to rehearse with people. Really get to know people in that way where everyone is just kind of dropping their guard and letting you see the silliness, the fun. In the whole process of it such peer support we exchanged. I never would have had the confidence to do that. To write it and actually put it out there for people to kind of judge it. I wouldn’t have had the confidence to do that if I wasn’t a part of this organization.

TR:

Now, if you don’t mind, I’m going to get a bit nostalgic!

Audio: Can’t Stop Won’t Stop PCB

You see, for several years, I served as PCB Conference Coordinator. I used to circulate conference information via audio. It was called “The Blast”. One of the things I did was conclude with the conference details… it went something like;

The 2019 PCB Conference will take place in Harrisburg, PA at the Crown Plaza located on South Second Street – just two blocks from the Amtrak and Greyhound station. (I told you it’s going to be accessible!)

The PCB room rate is;
94 dollars per night which is for a room with a king size bed.

(For the aristocrats among us!)

102 dollars for a room with two queen size beds.

(For the money savers or the very friendly!)

The festivities begin on October 17 and last through October 20, 2019.

For all the details visit pcb1.org/conference
Or you can pop over to this episode’s blog post at ReidMyMind.com for all the links.

If you want to reach out to Sue, well she’s not on Twitter, yet! She is however on Facebook if you can spell her name correctly, Susan Lichtenfels.

Every time I speak with Sue it leaves me with such a warm fuzzy feeling! She’s always so kind and patient especially with me as I often ask things at least twice.

TR:

What’s the qualifications for that again?

SL:

Oh my God, you’re gonna get kicked in the face, I swear to God!

TR:

Laughs… I want you to just say it!
SL:

My legs may not work but I might just give you a kick in the face!
(The two laugh together!)

Audio: Can’t stop, won’t stop PCB Conference!…

Audio: Explosion … Blast!

Audio: Reid My Mind Radio Outro

TR:
Peace!

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