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    • #14024
      Kathleen Sheffer
      Participant

      NDEAM

      October is National Disability Employment Awareness Month (NDEAM), recognized by the U.S. Department of Labor (read their press release here). NDEAM celebrates the contributions of workers with disabilities and educates about the value of a workforce inclusive of their skills and talents.

      I know in the past we have had some discussions about barriers to employment for people with pulmonary hypertension. Depending on the severity of the disease, patients with PH may be too fatigued to work or require continuous supplemental oxygen that’s not cohesive with their work environment. Other patients have found ways to overcome obstacles and tailor their occupation to their abilities.

      One of my biggest struggles when I first entered the workforce was knowing what accommodations I needed. My disease was so unpredictable. I knew I would need to take extended periods of time off for hospitalizations, but I could never say when that would be. Almost all my surgeries were unplanned.

      Have you asked for accommodations from your employer? What were they?

      What challenges do you face working with PH?

      Do you talk about your disease in interviews before you get a job offer? Why or why not?

    • #14034
      Brittany Foster
      Keymaster

      Great topic @kathleen-sheffer . I have experienced receiving accomodations when I worked as a special education teacher for a middle school for 3 years post grad until I just couldn’t do it anymore. It was my own body, as well as the push from my doctors that told me “enough is enough”. My immune system was severely weakened by being around children all day, I ended up getting meningitis and never ended up finishing the school year and tried going back on oxygen the next year but it just wasn’t working out for me, even with all the accomodations that I had.

      Before getting accomodations, I went to the union rep for the school, talked with the school district representative, and had a teacher friend be my advocate during the meetings since she was the one who was teaching with me. Together, we thought about what would make it easier for me. This included things like, sitting most of the day, having my group of students come to my desk and having them in a smaller group setting in the classroom, having A/c in the classrooms I was in (this was a perk for the other teachers too!), scheduled times to go to the nurse, check bp, oxygen levels, and a detailed plan of what to do in case of emergency. Someone on my teaching team also had to be certified in CPR. (not all teachers need to be trained in this but I think it should be a requirement regardless). I also wasn’t penalized for the amount of time that I took off work even if it exceeded the maximum if it were because of my condition. All of this was accomodations AFTER I was hired and the diagnosis and oxygen came a couple years into teaching. Things probably would have gone a lot different if I had all of this before and I’m not sure I would have even chosen the career path that I did if I could predict how this disease would effect me.

    • #14076
      Vanessa Vaile
      Participant

      How involved are PH groups and organizations with other disability groups? Living in Colorado I’m familiar with the Colorado Cross-Disability Coalition (CCDC), which works with multiple groups, is is pro-active and a good resource and information source. As an active digital advocate and organizer in other areas, I feel very strongly that it’s not enough to cheer a national awareness day or month for anything. We have to part of learning more about workplace barriers and conditions, educating others and advocating for fair enforcement and, where necessary, change. So, what is the state of disability coalitions where you live?

      American Association of People with Disabilities, described as “a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities.”

      At 75, workplace conditions are no longer an issue. That frees up my time and energy for research and advocacy. For what it’s worth, elderly and disabled are now grouped together (a whole ‘nother topic worth reflecting on), and the current trend in workplace regulation favors employer convenience over employee rights.

      Here’s a place to start, https://www.aapd.com/advocacy/voting/

      • #14079
        Brittany Foster
        Keymaster

        Thank you for all the links Vanessa. I know that there are disability advocates in the state that I live in (Rhode Island) . But i only found out about this when I applied and got accepted for disability. I think there needs to be better communication about what is offered and what types of support services are available for people on disability and with disabilities in general. I get information in the mail, but I’d much rather talk with someone in person or at least over the phone about this vs getting a package of information that is usually too hard to understand. There needs to be more advocacy and better vocalization about our needs. Thanks you again for your feedback and your great resources of information.

      • #14086
        Kathleen Sheffer
        Participant

        Vanessa,

        I live in a hub of disability rights groups. I graduated from UC Berkeley with a minor in Disability Studies and wrote a thesis on lecture hall design through the lens of universal design principles. One of my professors is a blind architect whom I continue to have a professional relationship with. In Berkeley I regularly passed by the first curb cut that activists created during the disability rights movement of the 1960’s, benefitted from one of the best Disabled Students Unions in the country, and made lasting friendships with several other students with disabilities. San Francisco, where I live now, has an Age and Disability Friendly Task Force with the goals of creating, implementing, and evaluating an Age- and Disability-Friendly Plan for San Francisco (furthering your point about the trend to combine people who are elderly and people who have disabilities).

        BioNews Services, which publishes our site, is not only providing relevant information to the disease groups they serve, the company also employs people with a range of disabilities. Patient columnists are paid to write (generously, from the competitive rates I’ve seen). BioNews now supports five different forums sites, each with one to two patient moderators, who are paid for the work they do. A good portion of our staff of editors, managers, marketers, etc have their own disabilities as well. I speak from experience when I say the company is uniquely understanding of varying accommodation needs. Employers like BioNews Services should get credit for going above and beyond the rights outlined by the Americans with Disabilities Act and the UN Convention on the Rights of Persons with Disabilities (since it’s an international company).

        PH News is separate from the Pulmonary Hypertension Association (PHA), but the PHA does the most programming in our community. They offer educational resources to patients and one-on-one support. Their advocacy work is focused on PH, naturally, but has far-reaching benefits to other rare disease groups and people with disabilities in general.

        As you can see, I’m really proud of the work our community does for people with disabilities outside the digital realm of awareness months.

        • #14090
          Brittany Foster
          Keymaster

          Kathleen,
          That is amazing that you are such a strong advocate and were in college too and continue to have a good relationship with your professors. I agree that BioNews goes above and beyond and is so accomodating for those of us with disabilities. Being a part of a company like this makes me seem like I am still doing SOMETHING with meaning in my life and helping others. I enjoy “working” from home on the days when I am not feeling well enough to move from bed much. There aren’t a lot of companies out there that are like this! Huge props to them!

    • #14082
      VK
      Participant

      Thank you all so much especially Vanessa for your research!

      If there was one accommodation I really wish they’d give it’d be a 30 hour workweek (with salary reduced appropriately). Nobody does that though in my field so oh well. =P

      • #14089
        Brittany Foster
        Keymaster

        Hi VK and Vanessa,
        in some school departments they actually had something called “job sharing” for those who couldn’t work the full time. They don’t do this anymore unfortunately but if there was a way that I could work half day and still receive some income from disability that would be amazing ! The longer hours are what kills me ! Even working a straight 4 hours is tough. Right now I nanny and it is good for me because I work in the morning for about an hour and then have a break in between and then work for a few hours after they get out of school. It allows me to get to my appointments and manage my medications and self care during the middle part of the day.

    • #14083
      Vanessa Vaile
      Participant

      VK — a 30 hour week would be great idea — an accommodation that would make a huge difference to anyone struggling with (and worn out by) a 40 or 40+ hour week.

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