President”s Message Winter 2016-17

By Sue Lichtenfels

As I put my fingertips to the keys I am unsure where to begin with my report. Like the swirling snowflakes outside this hospital window, my thoughts circle in my head. There is so much ground to cover in one message.

I’ll begin first with our annual conference. I am grateful to the Conference Program and Planning Team for its year-long effort to coordinate an amazing 2016 PCB Conference. Kudos to all of the PCB teams and outside presenters, for providing our attendees with such rich, worthwhile content. As always, Christina Heintzelman, and the corps of sighted member volunteers who are always ready to help, were invaluable to the success of the conference. This year PCB was very fortunate to have several corporate sponsors including: Vanda Pharmaceuticals, Western Pennsylvania School for Blind Children, Guiding Eyes for the Blind, Pennsylvania Association of the Blind, and PMC Pharmacy. Doug Hunsinger did a great job running our sound system and recorded the conference sessions for sharing on the pcb1.org website. If you missed the conference, you missed one of the best ones ever. While we cannot recapture the camaraderie and sense of belonging that we all enjoy at conference, we have provided the archived recordings of the conference presentations on our website for your enjoyment at home. Visit pcb1.org/conference and click on “Conference Audio.”

Just a week after the conference, I became very ill with flu-like symptoms. But of course, you know me I can’t take the easy way out. On November first I was transported to the emergency room with a fever of 103.2 and a heart rate of 155. Those symptoms actually were indicators that my blood had gone septic with an infection. A pressure wound which I had been working to heal since July had become severely infected and the bacteria invaded my bloodstream.

After two weeks in the regular hospital, I was transferred to a step-down facility classified as a long-term acute care hospital. I am nearing the end of my six-week course of intravenous antibiotics to treat the blood infection. With regard to the wound, right now and for approximately the next six months I will be restricted to bed rest—no sitting so there is little to no pressure on the wound. The doctors are using a wound vac to stimulate cellular growth and hopefully speed up the healing process. I get the sense that my time in this facility is growing short. Whether I’ll be moved to a nursing home next or allowed to return home with home health care nursing is still unclear.

Throughout my hospitalization I have received many warm wishes and great support from my fellow members. Whether you have reached out by phone, card, email or text, please know that your love and concern mean the world to me. Our First Vice President, Jule Ann Lieberman has been most helpful in picking up the administrative slack while I’ve been hospitalized and I thank her for that. Please do keep me in your thoughts and prayers as I continue my recovery.

One member and dear friend who I would like to thank publically is Darlene Barton. Darlene has visited me numerous times during my hospitalization but she went above and beyond on November 8. She called me early that Tuesday morning to share the research she had done on the procedure for filing an emergency absentee ballot in the general election. She offered to do all she could to make it possible for me to cast my vote despite not being able to get to the polls. She spent the entire day making it happen: going to the community library to print the application form; driving from the eastern part of the county to my home in the southwestern area of the county to get a copy of my photo ID; bringing the application to the hospital for me to sign and doctor’s to verify; driving the application to downtown Pittsburgh where she waited in line for a judge to approve the issuance of the emergency ballot; driving back to the hospital for me to fill-in my selections; and driving the ballot back to downtown Pittsburgh to be submitted. I am still in awe that Darlene gave up an entire day to insure that I (one person) could exercise my right to vote. She is a true advocate.

For many of us in the disability community, the election outcome was a disappointing surprise. None the less, next month, Donald Trump will take office as the 45th President of the United States. His election, combined with the Republican majority in both the Senate and House, has left many people with disabilities deeply concerned. Will this administration make drastic changes to the Department of Education and Labor that negatively impact people who are blind or visually impaired? Will funding for services we have come to rely on be cut? Will our current and future legislative and regulatory efforts be futile with this Congress? Will Trump’s bark be worse than his bite when it comes to making decisions that impact millions of Americans with disabilities? Right now, the future actions of the incoming elected officials is uncertain.

As your PCB President, I can tell you two things that are for certain though. First, if we see the new Washington as a fait accompli and throw up our hands in surrendering frustration, we leave all of those rights and services we have fought so hard for vulnerable to cuts. Realistically, the advocacy game has changed. For years we have been playing offense by promoting legislation and policies that would gain more independence and opportunities for people who are visually impaired. To put it in football terms, there has been a switch in possession and now it’s likely that we will need to play defense. This means our advocacy strategy needs to focus on defending the gains we have made from potential funding cuts and policy changes. So, while we may not be able to make great progress on current issues such as web accessibility and Cogswell Macy, each and every one of us needs to be steadfast in our defense of existing programs, services, and regulations that we have already fought so hard to achieve.

The other thing I know for certain, which I have addressed several times this year, is that PCB is much more than its advocacy efforts to change policy and promote legislation in Washington. So, even if these efforts are stifled during this administration, there is still much work for PCB and its members to do. Our efforts to make change at the state level need to continue, especially with the Civil Service Commission and blindness service provision. Changing people’s perceptions about individuals who are blind or visually impaired remains an on-going challenge. Might we use this time to strengthen our public education through TheReImage, awareness materials, community presentations, social media, and more? Our members have always been a resource for individuals new to vision loss. Can we more actively help these individuals through a vision loss expo, promoting our toll-free number as a vision loss resource line, developing materials for healthcare and aging professionals, etc.? A fundamental characteristic of PCB membership has been the mutual support and peer mentoring that exists. Perhaps we can increase these opportunities through conference workshops, teleconference discussions, peer technology training, and the like? Without a doubt, regardless of the political climate in Washington, PCB will continue on its mission to promote independence and opportunities for people who are visually impaired.

As the hours wind down on 2016, I ask that you conduct a self-diagnostic. While we typically do this in terms of our jobs, relationships, health, and lifestyle, I encourage you to reflect more closely this year on where you are with regard to living with your blindness or visual impairment. Ask yourself; am I as independent as I want to be? Do I have access to all the opportunities I would like? Am I treated as an equal among sighted peers? If you answer “No” to any of these questions, then consider what goals you want to achieve in 2017 and beyond.

As you consider how to go about achieving your goals, remember that your fellow members of PCB are probably confronting similar challenges and striving for success. Remember one of those definitions for TEAM, Together Everyone Achieves More. Become more active in your local chapter. Join the PCB work teams that focus on the goals you would like to achieve. This year, take an active role in improving your life and the lives of all persons with vision loss.

As the calendar year renews on January 1st, so does the PCB membership year. It is important for members to get their dues renewal to their chapter’s treasurer by early January. At-large members, please send your $10 dues directly to the PCB office. I ask that chapter leaders submit the first draft of their 2017 membership list to the PCB office by January 16 so Christina can begin updating the database. Please have your final lists to the office by February 15 for us to report total membership to ACB. Please take the time to confirm each member’s contact information and preferred formats for newsletters and correspondence. As new members join throughout the year, please keep the office informed.

Finally, the end of the year marks a change in leadership for PCB. I am grateful to our out-going board members George Holliday, Rose Martin, and Brent Kessler for their service and commitment. I hope you will continue your valued participation on PCB’s leadership teams. To Mary Ann Grignon, Christine Hunsinger, and Patricia Russell, I extend my congratulations and heart-felt welcome to the PCB Board of Directors. I’m sure you will continue your great leadership work at the board level. We are fortunate to have Tom Burgunder with us for another term on the board. I always appreciate Tom’s expertise and insight. Among our leadership teams, Al Pietrolungo of the Education and Employment and Tony Swartz from Fund Development will be stepping down for some well-deserved rest. The PCB organization and its members are fortunate to have such dedicated, hard-working leaders.

Happy New Year PCB!

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