An Important Announcement Regarding COVID-19 and Easterseals Services
September 2, 2021
September 2, 2021 Update All of us are ready to get back to how life was before the pandemic…but we all know that things are much different now than they were. In this op-ed, Easterseals President/CEO Ken Sklenar describes the measures Easterseals has taken to make sure our participants and staff are protected, while still receiving the most comprehensive services possible.
Though the status of most Easterseals services and programs remain similar to what we’ve previously posted on this webpage, we want to continue to reiterate our strong encouragement to staff and participants to get the COVID vaccination. As with all personal medical decisions, we recommend that individuals talk with their physician to determine if the vaccine is appropriate for their situation. The Centers for Disease Control and Prevention (CDC) clearly outlines the benefits of getting the COVID-19 vaccine here. Those reasons include:
COVID-19 and the Delta variant that has been on the rise, can have serious, life-threatening complications, and there is no way to know how COVID-19 will affect you. If you get sick, you could spread the disease to friends, family, and others around you.
Clinical trials of all vaccines must first show they are safe and effective before any vaccine can be authorized or approved for use, including COVID-19 vaccines.
Wearing masks and social distancing help reduce your chance of being exposed to the virus or spreading it to others, but these measures are not enough. Vaccines will work with your immune system so it will be ready to fight the virus if you are exposed.
The combination of getting vaccinated and following CDC’s recommendations to protect yourself and others will offer the best protection from COVID-19, including the more contagious Delta variant.
For information on the current status of Easterseals services please read below.
Status of Easterseals Services:
Adult Day Health/Senior Services: Returning and new participants have resumed services at our adult day programs in New Castle and Georgetown. Facemasks and social distancing are required while at Easterseals. For more information, please contact the Center Director at your location.
Day Services for Adults with Intellectual Disabilities (including the Life Skills program, Pre-vocational services, and Group Supported Employment): Under the guidance of the Delaware Division of Developmental Disabilities Services (DDDS), we have reopened our day program for adults with intellectual disabilities in all four locations. Per DDDS guidance, participants are required to wear a facemask for an extended period and must be able to distance while at Easterseals. For more information about returning to the program, please talk to the Program Coordinator at your location.
Individual Supported Employment Services have continued to offer support to those in community employment and others who may have been laid off due to the pandemic.
Therapy Services: Easterseals is currently offering in-person services in our centers, as well as community-based visits for our families in Early Intervention in homes and childcare centers. Additionally, we will continue with services via telehealth. New families looking into services for their children should reach out to their local office to get started.
Easterseals Camp Fairlee: Summer camp was able to open but was only able to serve a reduced amount of campers to keep everyone safe. Respite weekends and travel trip information is pending – you can always check the Camp Fairlee website for the most up-to-date information.
Personal Attendant Services: Easterseals Personal Attendant Services continue without interruption.
Community Outreach Program: Our staff in the Community Outreach Program continue to work to provide important community resources and caregiver support, including respite grant funding, which may be helpful to you. Call them at 302-221-2087 or email them at resources@esdel.org.
To make sure services are as safe as possible for the people we serve and our staff, Easterseals is continuing to take the following safety measures:
Providing personal protective equipment for staff.
Implementing procedures for daily screening for all employees, participants, vendors, and essential visitors to our buildings.
Following guidelines to allow for physical distancing based on the number of participants being served and the space available.
Implementing enhanced disinfecting procedures for all facilities using Electrostatic spraying systems.
Providing training to all staff on proper protocols for working safely with participants.
We will continue to update this page as changes to services occur. Thank you for your support as we navigate through this challenging time.
January 13, 2021 Update Happy New Year from all of us at Easterseals! We look forward to continuing to serve our community in 2021, in spite of the ongoing impact of COVID-19. We are encouraged by the news that a vaccine for COVID-19 is in the process of being distributed. As a service provider, Easterseals has advocated for early access to the COVID-19 vaccine for our support staff and the people we serve who choose to receive it. As with all personal medical decisions, we recommend that individuals talk with their physician to determine if the vaccine is appropriate for their situation. While the vaccine will not be required to receive services from Easterseals, we encourage our participants, employees and other stakeholders to get the vaccine. The Centers for Disease Control and Prevention (CDC) clearly outlines the benefits of getting the COVID-19 vaccine here. Those reasons include:
COVID-19 can have serious, life-threatening complications, and there is no way to know how COVID-19 will affect you. If you get sick, you could spread the disease to friends, family, and others around you.
Clinical trials of all vaccines must first show they are safe and effective before any vaccine can be authorized or approved for use, including COVID-19 vaccines.
Wearing masks and social distancing help reduce your chance of being exposed to the virus or spreading it to others, but these measures are not enough. Vaccines will work with your immune system so it will be ready to fight the virus if you are exposed.
The combination of getting vaccinated and following CDC’s recommendations to protect yourself and others will offer the best protection from COVID-19.
The public health agencies for both the state of Delaware and Maryland are determining how and when the vaccine will be available. We will be sure to share any information as it is available to us as a service provider.
For information on the current status of Easterseals services please read below.
Status of Easterseals Services:
Adult Day Health Services: A limited number of participants have returned to our adult day programs in New Castle and Georgetown. When state restrictions are lifted, we hope more participants will be able to come back. Facemasks and social distancing are required while at Easterseals. As with everything COVID related, resumption of services is subject to change with the Governor’s orders. For more information, please contact the Center Director at your location.
Day Services for Adults with Intellectual Disabilities (including the Life Skills program, Pre-vocational services, and Group Supported Employment): Under the guidance of the Delaware Division of Developmental Disabilities Services (DDDS), we have reopened our day program for adults with intellectual disabilities in all four locations. Per DDDS guidance, participants are required to wear a facemask for an extended period and must be able to distance while at Easterseals. For more information about returning to the program, please talk to the Program Coordinator at your location.
Individual Supported Employment Services have continued to offer support to those in community employment and others who may have been laid off due to the pandemic. You can see some of our essential supported employees in this video!
Therapy Services: Easterseals is currently offering in-person services in our centers, as well as community based visits for our families in Early Intervention in homes and childcare centers. Additionally, we will continue with services via telehealth. New families looking into services for their children should reach out to their local office to get started.
Personal Attendant Services: Easterseals Personal Attendant Services continue without interruption.
Community Outreach Program: Our staff in the Community Outreach Program continue to work remotely to provide important community resources and caregiver support, including respite grant funding, which may be helpful to you. Call them at 302-221-2087 or email them at resources@esdel.org.
To make sure services are as safe as possible for the people we serve and our staff, Easterseals is continuing to take the following safety measures:
Providing personal protective equipment for staff.
Implementing procedures for daily screening for all employees, participants, vendors, and essential visitors to our buildings.
Following guidelines to allow for physical distancing based on the number of participants being served and the space available.
Implementing enhanced disinfecting procedures for all facilities using Electrostatic spraying systems.
Providing training to all staff on proper protocols for working safely with participants.
We will continue to update this page as changes to services occur. Thank you for your support as we navigate through this challenging time.
October 1st Update Who could have imagined back in March when COVID-19 took hold in our community that we would still be grappling with its disruptive and challenging impact on our day-to-day lives? We know the lives of the families we serve – people with disabilities and seniors, and the families who care for them – have felt the impact of the pandemic perhaps more than any other sector or the population. We want to encourage you to stay strong as we enter the winter months. Our Community Outreach Program and our Case Managers are ready to help you navigate this difficult time. Call 302-221-2076 (NC) or 302-253-1129 (Georgetown) to connect with our knowledgeable staff.
Easterseals has reopened the services that were previously suspended due to COVID. After establishing a rigorous protocol to protect the safety of our clients and staff, we were excited to welcome back a limited number of individuals to our adult day programs in Delaware, per Governor Carney’s Executive Order. For information on specific services and details on how we have prepared for reopening, please read below.
Status of Easterseals Services:
Adult Day Health Services: We were able to open our doors for a limited number of participants to return to our adult day programs in New Castle and Georgetown. If state restrictions are lifted, we hope more participants will be able to come back. Facemasks and social distancing is required while at Easterseals. As with everything COVID related, resumption of services is subject to change with the Governor’s orders. For more information, please contact the Center Director at your location.
Day Services for Adults with Intellectual Disabilities (including the Life Skills program, Pre-vocational services, and Group Supported Employment): Under the guidance of the Delaware Division of Developmental Disabilities Services (DDDS) we have reopened our day program for adults with intellectual disabilities in all four locations. Participants are required to wear a facemask for an extended period and must be able to social distance while at Easterseals. For more information about returning to the program, please talk to the Program Coordinator at your location.
Individual Supported Employment Services have continued for participants who have not been laid-off by their community employers.
Therapy Services: Easterseals is currently offering limited in-person services in our centers, as well as community based visits for our families in Early Intervention in homes and childcare centers. You will be hearing from your therapy team directly as those services become available. Additionally, we will continue with services via telehealth. New families looking into services for their children should reach out to their local office to get started!
Personal Attendant Services: Easterseals Personal Attendant Services continue without interruption.
Community Outreach Program: Our staff in the Community Outreach Program continue to work remotely to provide important community resources and case management services which may be helpful to you. Call them at 302-221-2087 or email them at contact@esdel.org.
More details on the safety measures being taken as services have reopened:
To make sure services are as safe as possible for the people we serve and our staff, Easterseals is:
Providing personal protective equipment for staff.
Implementing procedures for daily screening for all employees, participants, vendors, and essential visitors to our buildings.
Following guidelines to allow for physical distancing based on the number of participants being served and the space available.
Implementing enhanced disinfecting procedures for all facilities and buses using Electrostatic spraying systems.
Providing training to all staff on proper protocols for working safely with returning participants.
Again, we thank you for your patience and support throughout this difficult time.
August 28th Update To the individuals and families served by Easterseals:
We were very excited to welcome back a small number of individuals to our Day programs in Delaware these past two weeks. The number of individuals in both day programs is limited per the capacity allowed by Governor Carney’s Executive Orders, but this gradual reopening was an important step as we seek to serve more families. As noted in previous updates, we are exercising great caution in following strict guidelines on reopening because of the vulnerability of some of the people we serve.
For information on specific services and details on how we are preparing for reopening, please read below.
Status of Easterseals Services:
Adult Day Health Services: We were able to open our doors for a limited number of participants to return to our adult day programs in New Castle and Georgetown. If state restrictions are lifted, we hope more participants will be able to come back. Face masks and social distancing is required while at Easterseals. As with everything COVID related, resumption of services is subject to change with the Governor’s orders. For more information, please contact the Center Director at your location.
Day Services for Adults with Intellectual Disabilities (including the Life Skills program, Pre-vocational services, and Group Supported Employment): Under the guidance of the Delaware Division of Developmental Disabilities Services (DDDS) we have reopened our day program for adults with intellectual disabilities in all four locations with limited capacity. Participants are required to wear a face mask for an extended period of time and be able to social distance while at Easterseals. For more information about returning to the program, please talk to the Program Coordinator at your location.
Individual Supported Employment Services have continued for participants who have not been laid-off by their community employers.
Therapy Services: Easterseals is working towards offering limited in-person services in the coming weeks. You will be hearing from your therapy team directly as those services become available. Additionally, we will continue with services via telehealth. New families looking into services for their children should reach out to their local office to get started!
Personal Attendant Services: Easterseals Personal Attendant Services continue without interruption.
Community Outreach Program: Our staff in the Community Outreach Program continue to work remotely to provide important community resources and case management services which may be helpful to you. Call them at 302-221-2087 or email them at contact@esdel.org.
A reminder of the safety measures being taken as services are reopened:
To make sure services are as safe as possible for the people we serve and our staff, Easterseals is:
Providing personal protective equipment for staff.
Implementing procedures for daily screening for all employees, participants, vendors and essential visitors to our buildings.
Following guidelines to allow for physical distancing based on the number of participants being served and the space available.
Implementing enhanced disinfecting procedures for all facilities and buses using Electrostatic spraying systems.
Providing training to all staff on proper protocols for working safely with returning participants.
Again, we thank you for your patience and support throughout this difficult time.
August 1st Update To the individuals and families served by Easterseals:
Thank you for your support as we navigate through the prolonged impact of COVID-19 on the services provided by Easterseals. We are continuing to work with our State agency partners on the planning and timing of the reopening of Easterseals services that have been suspended due to the pandemic. As noted in previous updates, we are exercising great caution in following strict guidelines on reopening because of the vulnerability of some of the people we serve.
For information on specific services and details on how we are preparing for reopening, please read below:
Status of Easterseals Services:
Adult Day Health Services: participants/families will be contacted by an Easterseals staff member to confirm a date when services can resume for them. As with everything COVID related, resumption of services is subject to change with the Governor’s orders.
Day Services for Adults with Intellectual Disabilities (including the Life Skills program, Pre-vocational services, and Group Supported Employment): The Delaware Division of Developmental Disabilities Services (DDDS) has issued guidance to day services providers on the conditions under which participants may return for services. Some of this guidance includes whether the participant is able to wear a facemask for an extended period of time, whether he/she has underlying health conditions that might increase the risks of COVID and whether he/she is able to practice social distancing. If you or your family member have not already spoken to your support staff at Easterseals, please contact the Program Coordinator at your location.
Individual Supported Employment Services have continued for participants who have not been laid-off by their community employers.
Therapy Services: Easterseals is currently taking steps for limited services to be delivered in person. Until then, all families have the option to continue or begin telehealth services. Your Easterseals program manager will contact you directly for further discussion about your services.
Personal Attendant Services: Easterseals Personal Attendant Services continue without interruption.
Community Outreach Program: Our staff in the Community Outreach Program continue to work remotely to provide important community resources and case managers who may be helpful to you. Call them at 302-221-2087 or email them at contact@esdel.org. Learn more about our upcoming virtual Caregiver Conference here.
Preparations for Reopening Suspended Services:
As we are preparing to reopen suspended services, we are taking aggressive steps to make sure services are as safe as possible for the people we serve and our staff, including:
Securing personal protective equipment for staff and participants.
Implementing procedures for daily screening for all employees, participants, vendors and essential visitors.
Developing guidelines to allow for physical distancing based on the number of participants being served and the space available.
Developing enhanced disinfecting procedures for all facilities and buses using Electrostatic spraying systems.
Providing training to all staff in preparation for re-opening.
Again, we thank you for your patience and support throughout this difficult time. We look forward to a time when all Easterseals services are fully operational and we can welcome everyone back.
June 23 Update Let’s face it. We all are looking forward to putting COVID-19 behind us and returning to our regular routine. That’s especially the case for our Easterseals individuals and families whose services have been suspended.
Unfortunately, at this time, we still do not have a concrete date when we can safely resume suspended services. Although other sectors of the State have been given the green light for reopening, the fact that the population we serve may be more vulnerable than other citizens means we must follow more strict guidelines.
Utilizing the guidelines provided through the State, we are currently implementing the necessary steps to reopen suspended services when it is safe to do so.
Here are some of the things we are doing to help assure that our services are as safe as possible for the people we serve and our staff:
Installing acrylic barriers at all reception desks
Installing acrylic barriers in therapy service areas in our facilities
Securing personal protective equipment for staff and participants
Purchasing Electrostatic systems to disinfect all facilities and buses
Developing restriction guidelines to allow for physical distancing based on the number of participants being served and the rooms available
Implementing procedures for daily screening for all employees, participants, vendors and essential visitors.
We will communicate a date for reopening as soon as it is available so families can prepare. As always, Easterseals’ top priority is that our services be as safe as possible for the people we serve and our staff once our programs resume. We are looking forward to that day!
June 1 Update We know families whose services were suspended are anxious to know when these programs will be reopening. Unfortunately, at this time, we do not have a concrete date when this will occur. We are mindful that people with disabilities may be more vulnerable than other citizens and are carefully considering the steps that must be taken to reopen when we have the clearance from the State to do so. We are in the process of carefully developing procedures to help assure a safe opening including things like:
Health screenings of staff and participants on a daily basis
Safe social distancing practices
Use of appropriate protective equipment.
As always, the health and safety of our participants and their families is our top priority, and we will be sure to alert you when we have an update.
May 15 Update We want to update you on the current status of services at Easterseals Delaware & Maryland’s Eastern Shore. As you may know, while some Easterseals services have been able to safely continue despite COVID-19, others had to be suspended. Our last communication indicated that our facility-based programs would remain closed at least until May 15th or until the public health threat is eliminated and additional guidance is released. While some businesses are moving toward reopening, we recognize that the people with disabilities that we serve may be more vulnerable than other citizens. Because of that concern, Easterseals is extending our facility-based program closures until such time that we can safely resume services. We want to reopen all services as soon as we can safely do so and we will contact each of our families when we have a reopening date to ensure that you are aware. Until that time, we will continue to evaluate the circumstances and take the necessary steps to prepare for a safe return for all participants.
For information on specific services, please see below:
Adult Day Health Services in New Castle and Georgetown continue to be suspended until further notice.
Day services for adults with intellectual disabilities at all locations are suspended until further notice, including Day Habilitation (the Life Skills program), Pre-vocational services, and Group Supported Employment (with a few individual exceptions)
Individual Supported Employment Services continue for participants who have not been laid-off by their community employers.
Therapy Services continue to be delivered to families through telehealth.
Easterseals Camp Fairlee: It is with a heavy heart that Easterseals has decided to cancel summer sessions at Camp Fairlee for 2020. If you have paid any fees toward summer camp sessions, we will be providing you with a 100% refund, including your deposit. We hope to make a decision by the end of summer as to whether fall respite sessions can occur.
Personal Attendant Services: Easterseals Personal Attendant Services continue without interruption.
Community Outreach Program: Our staff in the Community Outreach Program has important community resources that may help you through this trying time. Call them at 302-221-2087 or email them at contact@esdel.org.
This is a challenging time for our families and staff and we want to thank you for your continued support. As always, the safety and health of the families we serve and our staff are Easterseals’ top priorities as we make decisions on when fully to reopen services.
March 26 Update We hope everyone is staying safe and healthy during this unprecedented time. Since our initial announcement of the suspension of some Easterseals services, the governors of Delaware and Maryland have announced increased restrictions to stop the spread of the Coronavirus. Governor Carney’s stay-at-home order and closure of non-essential businesses began on March 24th and will remain in effect until May15th or until the public health threat is eliminated. Governor Hogan also has closed non-essential businesses effective on March 24th.
It’s important to underscore again that the safety and health of the families that we serve and our staff continues to be Easterseals’ top priority.
As per the guidance of the Governor’s executive order, Easterseals facilities, and any service that occurs within our facilities has been suspended. This includes all adult day programs, which will be closed until May 15 or until additional guidance is released. We hope we are able to resume services sooner, but want our families to be able to plan for the long term as needed.
We are pleased to say that our Children's Therapy Services are now able to deliver therapy to our families through tele-medicine to prevent a lengthy break in their therapy treatment plan.
Clients receiving services through Easterseals Personal Attendant Services continue without interruption.
Easterseals is continuing to provide Individual Supported Employment Services for participants who have not been laid-off by their community employers.
Camp Fairlee Summer Sessions continue as planned. April Respite Weekends have been canceled.
In an effort to support our families, our Community Outreach Program still is able to share important community resources that may help you through this trying time. You can reach them by calling 302-221-2087. If you call any Easterseals location and receive a recorded message, please leave a detailed message and someone will respond as soon as possible. You also can email us at our general email mailbox (contact@esdel.org) as it is monitored daily. In addition, here’s a link to a wide range of resources that might be helpful to you at this time.
We know this is a challenging time for our families and staff and we want to thank you for your understanding. We want to re-open all services as soon as we can safely do that. We will continue to evaluate the situation as it evolves and alert you to any updates.
Please know that everyone at Easterseals remains fully committed to the individuals and families we serve. We are confident that, together, we will come through this difficult time stronger and wiser than ever before.
March 16 Update
In light of recent announcements by the governors of both Delaware and Maryland and the Centers for Disease Control and Prevention to contain COVID-19, Easterseals Delaware & Maryland’s Eastern Shore has made the difficult decision to temporarily suspend certain services starting March 18th and returning April 6th in order to limit group settings. We will continue to evaluate the situation as it evolves and alert you to any updates to this plan.
Because people with disabilities are at a higher risk for getting sick from COVID-19, we want our families and staff to know that our goal is to keep people safe and healthy. We reached this decision after careful consideration of its impact on all of our families and community partners. This situation continues to change on a day-to-day basis and we believe it is vitally important that we use an abundance of caution.
The following Easterseals services in Delaware and Maryland will be temporarily suspended:
Adult Day Health Services in New Castle and Georgetown
Day program services for adults with intellectual disabilities in New Castle, Newark (Pencader), Dover and Georgetown, which includes Day habilitation (the Life Skills program) and Pre-vocational services
All Easterseals operated transportation is discontinued during this period.
All therapy services in New Castle County, Kent County, Sussex County and Salisbury, MD.
The Camp Fairlee respite weekend scheduled for March 20th is cancelled. Also, the Fairlee Vacations trips to Great Wolf Lodge and the cruise to the Caribbean are cancelled. Summer sessions are not impacted at this time.
The following Easterseals services will not be suspended at this time:
Personal Attendant Services: Clients receiving services through Easterseals Personal Attendant Services will continue without interruption because it is a service provided in the home which will help to relieve the pressures of other health care facilities in the state.
Easterseals will continue to provide Individual and Group Supported Employment Services. Participants in Supported Employment who have not been laid-off by their community employers will continue to receive on-going support from their Employment Specialists. Participants working in our Group Supported Employment program will continue to receive staff support to remain employed at their current site(s).
Easterseals Community Outreach Program and the Easterseals case manager will continue to be in operation to provide resources to families and can be reached by phone at 302-221-2087 or resources@esdel.org.
We sincerely regret that this decision will be disruptive to the families we serve, other community partners, and our staff. Having to suspend services to the children and adults with disabilities that we serve is very distressing to the dedicated staff of Easterseals, however, we believe this is an appropriate step to take at this time.
Taking Pride In Being Different: Reflecting on Being Non-Binary and Autistic
Monday, June 5, 2023, 11:57 AM
by guest blogger, Liz Johnson. I knew I was non-binary before I knew I was autistic. But neither wer…
Liz Johnson. Photo by Rialin José.
by guest blogger, Liz Johnson.
I knew I was non-binary before I knew I was autistic. But neither were surprising to me, truthfully.
I am not the first, and I’m certainly not the last, to be at this intersection of identity.
Research from a 2020 study cites gender-diverse people are three to six times more likely to be autistic than those that are cisgender.
Before I even knew I was trans or autistic, I knew myself to be strange – both because other kids called me that, and because it was one of those lingering suspicions. But I owned that early, befriending fellow playground weirdos and saying “thank you” anytime another child would bestow the word “weird” upon me in an insult. I had an understanding that being a little odd would always feel more comfortable to me than changing parts of myself that I cherished to fit an expectation of normalcy. As I got older, this internal acceptance of difference, though sometimes hard-fought, made it easy to interrogate, accept, and love my non-binary identity. Early on, I understood the expectation of heteronormativity – the societal expectation to be heterosexual as the standard – already having come out as bisexual at thirteen. It was no shock the same normative standard would apply to gender.
I remember feeling like, as much as I experimented with clothing, I wasn’t getting the gender euphoria I wanted. The absolute joy I got when people saw me as my full self in other facets just wasn’t clicking when it came to my gender. Long curly hair, a girlish nickname, and she/her pronouns just weren’t feeling suited to me – like a sweater I could admire on somebody else but fit me all wrong. Research being a favorite dual purpose coping mechanism/hobby of mine, and human psychology and sexuality being an intersection of special interest, I dove into researching why I felt the way I did about gender. A deep dive through the internet, combing through explanatory breakdowns of queer theory, to expansive lists of gender identity labels, left me to land on simply identifying as the label I felt suited me best – non-binary. I had friends who were having a lot of the same feelings. When I shared this identity with them first at seventeen – asking them to use my new name, use gender neutral pronouns – it was a safe way for me to confirm that being non-binary feels like home to me. I was lucky to have a supportive family as well, being surrounded by a community that supported and affirmed me, I could truly be myself. I think this identity and my relationship to it has grown with time. As I get to know myself better, I live in it more fully. It was the right fit then and it is the right fit now.
Liz behind the scenes of a music video. Photo by Rialin José.
I was diagnosed with Autism Spectrum Disorder just this year, at twenty-six. I got here after similarly winding rabbit holes of research and a steady influx of my community support. I’m still settling into it all, but it definitely made so much of my life make more sense – in a lot of the same ways finding the words for my gender did. But beyond that, understanding how some of the idiosyncrasies of my mind worked was such a relief. I already had a diagnosis of ADHD given at twenty-one, so neurodiversity isn’t a stranger to me. In fact, across my circles of friends, most of my friends were neurodivergent anyway in the same way that a lot of my friends are queer and trans too. We tend to find each other somehow! My autistic friends were intrinsic to helping me understand myself as an autistic person in addition to having ADHD. Again, being a sounding board for my feelings just as the times in my teens when I had been processing my gender. My family showed up again in a new way, some of them asking the same questions about behaviors and feelings they had day-to-day, eagerly awaiting my assessment results. I was happy to be the person that could deliver the news that I was autistic, and start conversations on what that not only looked like for me, but be a support for my loved ones wondering what it looks like for them.
Access to the information to get the understanding of myself has come from a combined force of my support system, wider community of people who share my identities, and the internet as a whole. Looking back, it was vastly easier to uncover and affirm my gender identity than it was to gain an autism diagnosis. People assigned female at birth have a harder time getting diagnosed. “A fundamental issue with the current diagnostic methods is that the behavioral markers used as criteria are established on pre-existing conceptions of what autistic behaviors look like. These criteria have been developed based on the predominantly white male populations previously identified as autistic” (Hull et al. 2020). Not every person’s experience of autism will look the same. I mask highly, and the way I stim with finger tapping and knee-bouncing, just as an example, can be overlooked as a stimming behavior. I’m learning more about how I can feel at home as an autistic individual, and the autistic community around me is instrumental in that.
There is an intersection of queerness that aligns with one of the great strengths of neurodiversity. Both communities value questioning normative standards and challenging the societal expectations put on us. The kind of weirdness I’ve always felt for being different than the expectation is not only understood by trans and autistic people alike but, more often than not, celebrated by both. I celebrate it, too. Neurodiversity manifests in many ways as does gender diversity. No one individual’s experience with gender, nor being autistic, will be exactly the same. Existing on the spectrums of both empowers me to be my fullest and truest self, and I’m inspired by all the people who join me at this intersection.
Liz is a queer & disabled writer, filmmaker, and multimedia artist. They are a Columbia College Chicago graduate and current freelancer with a broad portfolio, and pride themselves on being a jack-of-all-trades (and master of a few).
Behind the Screen: Conversations with a Disability Advocate and Filmmaker
Wednesday, May 24, 2023, 12:17 PM
As a teenager, Alexander Freeman was weary about listening to his mom’s suggestion of taking a…
As a teenager, Alexander Freeman was weary about listening to his mom’s suggestion of taking a film class in high school, but he eventually gave in. Years later, he admits his mom was right – taking that class inspired a new passion with the medium and launched his career. “I took the class and absolutely fell in love…I think, on a really basic level as humans, we are drawn to [it] and we can’t help but listen to what’s happening on the screen,” Alexander explained.
Now an award-winning filmmaker and disability-rights activist, Alexander was recently featured in LA Weekly Magazine for his documentary, The Last Taboo. The documentary explores the topic of sexuality and intimacy from the eyes of disabled adults. Alexander has Cerebral Palsy and uses his own experiences and the true experiences of others to inspire his work. His other documentary,The Wounds We Cannot See, which shares one woman’s real battle with addiction, PTSD, and mental illness, is available for purchase on Amazon Prime Video.
Alexander described how filmmaking took the utmost priority in his life at an early age: “I didn’t really have a ton of friends in high school or a lot of room to socialize, so I was just like, ‘I don’t need people’ – I am just going to focus on what I am good at. So, all through high school, I made films.”
That focus paid off. “At the end of school, I got very lucky because I caught the attention of a production company,” he said. That company saw Alexander’s work and immediately offered to finance his next project. From there, his career began.
When asked about his connection to Easterseals, Alexander laughed, “I really think Easterseals is in my blood!”
It was Alexander’s parents who got him involved with Easterseals Massachusetts. He recalled, “My parents were like, okay, we have a child with disabilities, what do we do? What kind of services are out there? And Easterseals was there for [them].”
Alexander on location filming The Wounds We Cannot See.
Alexander shared, “A lot of the technology that I used was directly from Easterseals, so I started working with an Easterseals technology specialist when I was really little, and then that continued as I got older and grew up.”
Alexander has one thing he wants everyone to take away from his story: “I am only where I am today because of a lot of people who helped me along the way, and I think that is a very important lesson, not just for me or people with disabilities, but a lesson to people in general…No one gets where they are on their own. Everyone must have moments where they have to look back and say thank you for all your help.”
Alexander’s disability advocacy continues the spirit of helping others along the way. His latest project, a YouTube series titled Life with Cerebral Palsy | Q & A, is described on his film production company OUTCAST Productions’ YouTube channel as “Everything you wanted to know about living with a disability, especially cerebral palsy, but didn’t know how to ask.”
To keep up with his continuing work, you can follow Alexander on Instagram, @realalexanderfreeman.
A Trip to DC: Press Briefings, Panel Discussions and Sharing the Room with the President
Friday, May 19, 2023, 12:13 PM
It’s not every day you share the stage with a rising star in the television world, but it happ…
It’s not every day you share the stage with a rising star in the television world, but it happened for me!
Ben speaking at the Capitol Visitors Center
In Washington, D.C., I had the distinct honor of participating in the release of Easterseals’ brand-spanking new “State of Disability Equity and Access,” a special report showcasing the improvements made for the disability community since the signing of the Americans with Disabilities Act 33 years ago. More importantly, the report serves as a call-to-action for the necessary improvements to ensure full inclusion for future generations – a compelling reason to travel 12 hours by car to D.C., I’d say.
On stage at the historic National Press Club, I joined the transportation panel, moderated by MSNBC’s Symone Sanders. She’s incredible, and if I’m being honest, I felt right at home on stage interacting with one of television’s most popular hosts. I’ve never met an unfriendly microphone! Our panel discussed developments that have eased travel for people with disabilities, but I focused on the importance of improving the airlines to be more accessible for wheelchair users.
This isn’t a new story. A decade ago, I traveled to Washington, D.C., with a plan and a petition, advocating for more accessible airlines, desiring a system where I could fly without having to get out of my own wheelchair. The reality is, as I told The Advocate, I haven’t flown since my injury – it’s too dangerous. The current system risks major harm to my chair, and even possibly long-term health concerns. It’s not right, and I’m elated that Easterseals has joined this fight for flight!
Enjoying the Lincoln Memorial at night
Prior to my on-stage, under-the-lights discussion with Symone Sanders, we officially unveiled the report during a press briefing at the Capitol Visitors Center – a fairly new addition to the Capitol Building. Tucked inside a room that has been used for major press briefings, I spoke alongside Easterseals CEO, Kendra Davenport; Jessica Tuman, VP, VOYA Cares; Ehrhardt Preitauer, president and CEO, Caresource; and outstanding disability advocate Emily Ladau, and Kathleen Perez of the Coelho Center, who helped produce the report. Boy, was I in good company, with a group of passionate inclusion activists assembled in DC with a vision for the future. Every time I travel to D.C., something special happens – this time was no different.
Speaking of special, for the first time, our group visited the Lincoln Memorial and laid our eyes on D.C., at night, where you can actually see the reflection of the Washington Memorial in the reflecting pool. We saw and snapped a photo with Cory Booker as he was leaving the Capitol. I was even in the same hotel, the Washington Hilton, as the President of the United States!
Meeting Senator Cory Booker
Yep, when we arrived at our hotel, the woman behind the desk asked us, “will you be leaving the hotel in your car tomorrow? If so, it will be difficult if not impossible, as this place will be crawling with Secret Service.” I had to ask, “why is that?” The woman replies, “the president will be here.” My mother retorts in a very serious tone, “the president of WHAT?” The woman replies, “the President of the United States, ma’am.” Only in DC! And you better believe I worked my way into the room with President Biden!
What a trip. Sharing the same room, albeit a large conference, as the president, sharing the stage with a television star, observing the reflection pool at night, talking with Cory Booker (who, I might add, was a very kind gentleman, chatting with kids from Indianapolis before snapping a photo with me), being with my Easterseals friends, and hanging with my Change for Balance colleagues as we worked the Easterseals forum. It was absolutely another successful trip to our nation’s capitol.
Overall, my hope, and the hopes of every single one of the panelists, advocates, and champions as a part of this experience, are for the next generation of people with disabilities. Our hope is that children with disabilities will see the airlines not as a barrier, but an opportunity to explore the world. Our hope is for teenagers with disabilities to dream endlessly about their future careers, not seeing corporate America as unattainable. We have hope.
I’m a dreamer, but I believe, together, we can create a more inclusive world for all of us.
But then again, maybe I’m just starstruck from my time on stage with Symone.
Hats off to TED Talks! They highlight people with disabilities pretty regularly there, and with this…
Hats off to TED Talks! They highlight people with disabilities pretty regularly there, and with this being Autism Acceptance Month, they’re featuring an expert: a 20-year-old college student who was diagnosed as autistic in her teens.
Now a sophomore at Austin College, Kate Kahle is an advocate for autism acceptance. From her TED Talk’s bio:
She hopes to promote autistic self-love as well as help neurotypical individuals see autism not as a tragedy or a disease, but rather for what it is, a lifelong, genetic developmental disability that is just another way of thinking and being in the world.
In her TED Talk, Kate tells her audience that she’d always had autistic traits, but it wasn’t until she developed severe anxiety during her freshman year in high school that her parents took her in for an evaluation. “I just thought I was weird,” she says with a shrug.
It was then that she was diagnosed with Autism Spectrum Disorder (ASD). “We were all shocked,” she says, going on to explain that symptoms common in women and girls with autism can differ greatly from symptoms boys and men experience.
“For every four boys diagnosed with autism, only one girl is diagnosed,” she says, adding that studies following children since birth show that the natural ratio of males to females with autism is closer to three to one.
But wait! Why am I telling you all this? Better to hear it from the expert! Kate Kahle outlines her thoughts on this discrepancy in her TED Talk, Why Autism is Often Missed in Women and Girls.
How would an inclusive society differ from the one we’re living in now? Well, for one thing, an incl…
How would an inclusive society differ from the one we’re living in now? Well, for one thing, an inclusive society would ensure people with disabilities have equitable access to four things other Americans may take for granted:
Education
Employment
Health care
Transportation
Transportation has been high on my list of concerns lately. I just booked a flight to head out East with my Seeing Eye dog, Luna, to attend a memorial service for an old friend of ours.
Flying got easier for us a dozen years ago after lawmakers made revisions to stop people from passing their monkeys, parrots, rodents and reptiles off as “service animals” in order to bring them on board. Guide dogs are well-behaved, expertly-trained and intelligent, but let’s face it – monkeys, parrots, rodents and reptiles can be pretty distracting to a dog who is trying to guide their companion safely to a seat on an airplane.
Those changes in 2011 define a service animal as “any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability.” Notice the specific word “dog” in that sentence? According to law, other species of animals (whether wild or domestic, trained or untrained) are no longer permitted to accompany individuals onto planes. Ever since that law went into effect in 2011, getting on and off planes with my Seeing Eye dog has been a breeze.
But now they’ve changed the rules again. Now I have to fill out a form with the Department of Transportation anytime I fly with my Seeing Eye dog. The form asks for information about me, my email address, phone number, etc. It also asks for our veterinarian’s name and phone number, the school where the dog was trained, how much the dog weighs, and whether or not the dog is healthy.
And oh, did I mention that the paper form is not accessible? My sighted husband has to help me fill out the form each time we fly, and I’m required to carry that form with me on board.
Each airline seems to have a different method of processing the form. Some have never seen the DOT form before, some say they also need an ID number for my dog, some ask for an identification card, some ask for certification of a rabies vaccination.
So while people who can see simply show their boarding pass and saunter down the jetway, I’m left to supply forms, certificates, and ID cards before my Seeing Eye dog is allowed to guide me onto the plane.
Once we board, we’re supposed to keep our dog within our footprint. This was pretty easy to do with my previous guide dogs (you command “sit!” – then you command “Down!” and once they’re laying down, you maneuver their bottom under the seat in front of you and have them place their head between your feet). Luna is a small black labrador retriever (she weighs about 50 pounds), so she can fit there pretty easily. But as the space between airplane seats get smaller and smaller, many guide dogs will not be able to fit there anymore.
I flew a lot more often before COVID, and back then, flight attendants would regularly offer me bulkhead seats to accommodate my Seeing Eye dog. But I’ve heard from other friends who are blind that the bulkhead is now considered “premium economy” and you have to pay extra to sit there.
It just doesn’t seem fair. I hope the advocates and staff participating at the Easterseals Policy and Partnership Forum in Washington, D.C., might talk to members of Congress and encourage them to take another look at the Air Carrier Access Act. We can build an inclusive future by making it easier for people who are blind or low vision to travel on airplanes with their service dogs!