Easter Seals, Inc. (d/b/a "Easterseals") ("we," "our," or "us") understands that data privacy and the protection of personal information is important to you. This Privacy Notice explains how we collect, use and share your personal information, and your rights and choices regarding the personal information we collect about you.
Please read this Notice carefully to understand our policies and practices regarding your personal information and how we will process it. You can also click on the links below to navigate to a specific section.
This Privacy Notice applies to all donors, members, website visitors, business partners, employees, job applicants, and individuals who otherwise interact with Easterseals whom we collect personal information from. We often refer to your interactions with us as using our "services" throughout this Notice.
2. Personal Information Collection
We collect a variety of information as part of our operations, including personal information and other information. "Personal information" is any information that identifies, relates to, describes, is reasonably capable of being associated with, or could reasonably be linked, directly or indirectly, with an identifiable individual.
a. How We Collect Personal Information
Easterseals collects information, including personal information, from and about its donors, event attendees and program participants, individuals who interact with our affiliate members, employees and job applicants, individuals who visit our website and other individuals who choose to interact with us. We collect information from or about you in the following ways:
Directly from you. We collect information directly from you when you make a donation, create a user profile on our website, attend an event or program we are offering, apply for employment or gain employment with us, when you visit our website, and when you otherwise voluntarily submit or provide information to us.
Automatically. When you visit and interact with our website, we collect information automatically through cookies. For more information about cookies on our website, please visit the section below titled "Cookies."
From our Affiliate Members. We rely on our affiliate members to provide us with information about the individuals they provide services to and interact with so that we can understand the impact of our and our affiliate members' programs and services, yield actionable insights, and drive future-forward decision making to ensure that our services and programs make the most impact in the communities we serve.
From Other Sources. We may collect information about you from other sources and we may combine information from other sources with information we collect through our services or interactions with you. Examples of the other sources we most frequently collect information from includes national donor data bases and registries, and companies that compile mailing lists about individuals.
b. Types of Personal Information We Collect
The types of personal information we collect depends on how you interact with us, including whether the interaction is through one of our affiliate members or directly with us. In many cases, the personal information we collect will be apparent from the context in which you provide the information.
We collect the following types of personal information from you depending on how you interact with us (i.e., donor, employee, etc.).
Categories of Personal Information
Categories of individuals
Contact Information. This includes your name, mailing address, email address, social media handle, or other similar identifiers.
Donors
Employees and job applicants
Website visitors
Event attendees
Program participants
Individuals who interact with our affiliate members
Easterseals affiliate member users
Identification Information. This includes your SSN, driver's license number, passport number, or similar legal identification information.
Employees and job applicants
Profile Information. This includes information about your activity and interactions with us, including your donor tendencies and donation history, information you voluntarily provide to us or that we collect from other sources regarding your interests, preferences, and characteristics. We compile this information we collect about you to better understand you.
Donors
Website visitors
Event attendees
Program participants
Individuals who interact with our affiliate members
Easterseals affiliate member users
Health Information. This is information about your health, disability, or medical condition which may include "Protected Health Information" (PHI).
Event attendees
Program participants
Individuals who interact with our affiliate members
Employees and job applicants (if you choose to participate in our group health plan)
Financial Information. This includes information about your wealth and financial status, income, credit card, bank account, or payment information.
Donors
Employees and job applicants
Individuals who interact with our affiliate members
Location Information. This includes information about your location.
Donors
Website visitors
Easterseals affiliate member users
Professional or Employment-Related Information. Current or past job history or performance evaluations.
Employees and job applicants
Affiliate clinical and non-clinical service providers
Internet or other similar network activity. Browsing history, search history, information on your interaction with a website, application, or advertisement.
Website visitors
Donors
Easterseals affiliate member users
Interaction Information. This includes information about your attendance at events we host or programs we sponsor, as well as information about correspondence with us and other ways you interact with us.
Donors
Event attendees
Program participants
Website visitors
Individuals who interact with our affiliate members
Easterseals affiliate member users
Sensitive Personal Information. We may collect certain sensitive personal information including race, gender, and age information. This information is collected in aggregate form.
Employees and job applicants
Individuals who interact with our affiliate members
Easterseals affiliate member users
We may not collect all of the above categories of information from each category of individual who interacts with us. Please note that if you voluntarily provide us with additional information when you interact with us that does not fit one of these categories of information or individuals set forth above, we will collect the information and use it for the purposes you direct or that we disclose to you.
As noted above, in certain circumstances, we may also collect "Protected Health Information." "Protected Health Information" ("PHI") is individually identifiable health information. We sometimes collect PHI when we gather information about the effectiveness of our programs in order to understand whether a program that we or our affiliate members offered resulted in improved outcomes for the individuals or communities our programs are designed to serve.
3. How We Use Personal Information
We use personal information for our legitimate business purposes to further our mission and for other purposes disclosed to you at the time data is collected. More specifically, we use personal information in the following ways:
Provide our services, programs, and events to the communities and individuals we serve.
Send you confirmations about event or program registration, or donations.
Process donations and gifts made to Easterseals or our affiliate members.
Understand our donor base and potential donors.
Measure the effectiveness of our services, programs, and events, including services, programs, and events offered by our affiliate members.
Communicate with you about our services, programs, events, happenings, and news.
Respond to your comments, inquiries, and customer service requests.
Market our events, services, programs, and potential donor opportunities to you. You may opt-out of marketing communications at any time.
Provide you with employment, or consider you for employment with Easterseals.
Process payroll and other benefits afforded to our employees.
Improve and personalize our content and services.
Monitor and analyze trends regarding our services, programs, and events, including services, programs, and events offered by our affiliate members.
Protect against and prevent fraud, unauthorized transactions, and manage risk exposure.
Enforce our legal rights and agreements.
Comply with applicable legal requirements.
Carry out any other purpose you consent to, that we disclose to you at the time your data is collected, or that you direct us to.
We may aggregate and de-identify personal information we collect from you to understand the effectiveness of our programs, services, and offerings, as well as to understand our donor base and donor trends. When we aggregate or de-identify information, it is no longer personally identifiable.
4. How We Disclose Personal Information
Easterseals may share your personal information in the following circumstances, and as otherwise described in this Notice:
Affiliate Members. We share information with our affiliate members in order to understand and improve the impact of our and our affiliate members' programs, services, and offerings. Please see the section below titled "Easterseals Affiliate Members" for more information.
Service Providers, Vendors, and Consultants. We rely on third parties to perform functions on our behalf. Some of these service providers include marketing service providers, payment service providers who help us process donations and pay our employees, cloud storage providers, website hosting platforms, client relationship management providers, HR or employee benefits providers, and content providers. We endeavor to ensure written agreements are in place with all service providers, vendors, and consultants where feasible and appropriate. All service providers, vendors, and consultants are required to use the information we disclose to them at our direction and only for the purpose(s) for which it was disclosed to them, and they are required to adhere to security and confidentiality measures.
List Rental and Exchange Program. We may share certain information about our donors with national donor registration and list service providers in order to grow our donor base and more effectively reach current and prospective donors. If you do not wish for your information to be shared with these third parties, you may opt-out by contacting us via a method set forth in the "Contact Us" section below or by visiting our website and contacting us through a means listed on our website. If you would like to know which third parties participate in the list rental and exchange program, you may also contact us via one of the methods listed below.
Law Enforcement Agencies, Courts, Regulators, Government Authorities, or Other Third Parties. We may disclose your information: 1) to apply with a legal obligation or court order; 2) when we believe in good faith that the law requires it; 3) at the request of governmental authorities conducting an investigation; 4) to verify or enforce our policies, procedures, terms of service, and other agreements, or to protect the rights, property, safety, and security of Easterseals, our members, vendors, business partners, service providers, affiliate members, website visitors, or the public; 5) to respond to an emergency; or 6) when we believe it is necessary or appropriate to prevent physical harm or financial loss, or in connection with an investigation of suspected or actual illegal activity.
Successor Entities, Buyers, Transfers and Mergers and Acquisitions. We may disclose your information to a buyer, potential buyer, successor in interest, or to an organization in connection with a bankruptcy, transfer, merger or acquisition, or other transfer of some or all of Easterseals' or an affiliate's assets, which may include your information. If this occurs, we will endeavor to ensure that the successor entity uses your personal information in accordance with this Privacy Notice, or provides you with notice and a choice about future use of your personal information.
5. Easterseals Affiliate Members
Easterseals has a number of affiliate members throughout the United States who interact directly with the populations we serve by bringing Easterseals' mission and work directly into the community in which the affiliate member operates. While our affiliate member organizations are associated with and use Easterseals branding, they may have their own practices regarding how they collect, use, share, and retain information when you interact with them.
As described above, affiliate members share information with us, and we share information with our affiliate members. This information sharing occurs so that we can understand the impact of our and our affiliate members' programs and services, yield actionable insights, and drive future-forward decision making so that we can continue to further the Easterseals' mission of equity, inclusion, and access for individuals with disabilities.
6. Links to Other Sites
Easterseals' website may contain links to other sites, including to our affiliate members, as well as links to non-affiliated third parties, such as social networks or business partners. These linked sites may have personal information collection, use, and disclosure practices that differ from Easterseals' practices. We encourage you to review the privacy policies of websites that you visit before sharing your personal information with them. Please also be aware that if you disclose personal information, PHI, or other sensitive information through public forums, at an event, or on online message boards, this information may be used by others. We take no responsibility for the content, security, or confidentiality of any information posted on or conveyed in these public spaces.
7. Security of Personal Information
Easterseals knows that information security is of the utmost important to our donors, affiliate members, website visitors, and individuals whose information we collect. We maintain reasonable technical, administrative, physical, and organizational safeguards in proportion to the sensitivity of information we collect that are designed to prevent unauthorized access, use, and disclosure of personal information.
However, no electronic data transmission or processing of personal information is completely secure, so we cannot guarantee the security of personal information. We encourage you to assist us with securing your personal information by using a strong password and not disclosing your login credentials, where applicable, to anyone. If we become aware of an incident that affects your personal information, we will investigate and comply with all reporting obligations.
8. Transmission of Health-Related Information
Easterseals understands the sensitivity of collecting and using health-related data. It is not Easterseals' intent to collect personally identifiable health-related information or PHI. If we do collect personally identifiable health-related information or PHI, it will not be used by or shared with entities other than Easterseals or our affiliate members, unless the information is de-identified. Any transfer of personally identifiable health-related data between Easterseals organizations will take place in a secure environment with access allowed only to certain qualified employees of Easterseals. Easterseals will comply with all regulations set forward by the Health Insurance Portability and Accountability Act (HIPAA). To learn more about HIPAA, visit the U.S. Department of Health and Human Services Office for Civil Rights.
9. Retention of Personal Information
We will retain your information only for as long as necessary to achieve the purpose for which it was collected. This may mean that we will continue to retain certain information even after we stop providing our services directly or indirectly to you, after you delete your user profile, or cease interacting with us, as required by law or for our legitimate business purposes. We may also retain de-identified, aggregated, or anonymous information that does not identify a particular individual. In all cases where we retain data, we do so in accordance with limitation periods and record retention obligations that are imposed by applicable law.
10. Your Rights and Choices Regarding your Personal Information
Easterseals offers various rights that are consistent with state consumer privacy laws. Easterseals offers the option to access, correct, and delete your personal information. If you are a registered user of our website, you can access your Easterseals profile and update your contact information and user preferences by clicking here. Upon your request, we will delete, aggregate, or de-identify personal information related to you that is retained in our organizational databases, unless we are required to continue to retain the information in an identifiable format. To exercise your right to deletion, or to modify or correct your information other than through the link above, please contact us via a method set forth in the below "Contact Us" section.
You can also change your communication preferences and opt-in or opt-out of marketing communications from Easterseals. To opt-out of receiving email communications, postal mail or from participating in the list rental and exchange program, or to request a disclosure of list rental and exchange information, please follow the directions below.
We will endeavor to fulfill all requests within a reasonable timeframe.
11. Cookies
Our website uses or may use cookies, web beacons, pixel tags, and similar technologies (collectively, "cookies"). Cookies are small text files stored directly on a website visitor's computer or mobile device that automatically collect certain information from users such as browser type, IP address, time spent online, pages visited, referring URL, and additional aggregated website traffic data. We also rely on partners to provide features of our services, which may involve using cookies.
We use cookies for the following purposes:
Functionality. These cookies are necessary for us to ensure that the website functions properly.
Security. These cookies are necessary for us to mitigate the risk of data breaches and similar attacks by ensuring that requests are submitted to our website from proper domains.
Authentication. These cookies allow us to authenticate user requests and to maintain session information related to users.
Preference. These cookies allow our website to remember which events you have signed up or registered for, the products you place in your shopping cart, and to recognize your device.
Advertising. These cookies allow us to provide you with more relevant advertisements.
Analytics. These cookies enable us to learn more about how users and visitors interact with our website, including pages visited, how much time is spent on each pages, and similar information. We use this information in aggregate.
Third-Party. These cookies are placed by third parties such as Google and social media networks. These cookies track and monitor how you interact with our services and other websites, provide us insight into how you interact with our website (such as analytics), facilitate account registration and login, and also enable the sharing of content from our services to these third parties. We do not control the data use or sharing practices of these third parties. If you do not wish to accept third party cookies, we encourage you to update your browser settings accordingly.
The use of cookies has become standard among website operators. Most browsers are initially set to accept cookies. You can usually set your browser to refuse cookies that are not necessary or to indicate when a cookie is being set. To understand your options regarding cookies, you can visit the help section of your web browser, or take a look at the links below:
If you refuse cookies, you may not be able to use certain functions on our website and our website may not function as smoothly as it does when cookies are enabled.
12. International Transfers of Personal Information
Easterseals and all of its affiliate members are located in the United States, and all programming offered by Easterseals and its affiliate members occurs in the United States. Because of the global nature of the internet, the Easterseals website may be accessible from jurisdictions other than the United States, even though Easterseals does not operate, provide, or market its services outside of the United States. If you access the Easterseals website outside of the United States, your information will be transferred to and processed in the United States. Since the data protection laws of various countries differ, information transferred to the United States may not be subject to the same level of protection as the jurisdiction in which you reside. If you choose to access our website from a jurisdiction outside the United States, we rely on your consent to transfer the data to the United States. To the extent you do not consent to data transfers to the United States, please do not provide us with your personal information or visit our website.
13. Information from Children
Our website is not directed towards children under the age of 13. We do not knowingly collect personal information from anyone under the age of 13 through our website without parental consent. If you become aware that we have collected personal information from an individual under the age of 13 through our website without parental consent, please let us know so that we can take appropriate action.
14. Changes to this Notice
We may update this Privacy Notice from time to time. If we make material updates to this Notice, we will endeavor to provide you notice by placing a prominent notice on this website and/or sending an email notification of the change. We will also update the "last updated" date at the top of this policy. Any changes will be effective immediately on posting unless otherwise indicated. Continued use of our services after updates to our Notice will be deemed consent to the changes.
Easter Seals Oregon promises to keep your Personal Health Information (PHI) private. When we work with you, we will have to write information down about the treatment and services we provide to you. The law says that we have to keep your health information private. The law also says that we have to give you this notice of what the law says about your personal health information and that we have to tell you how we keep your PHI private. Federal and state laws say that we have to follow the rules that we have in place at the time.
We realize that these laws are complicated, but we must provide you with the following important information:
How we may use and share your personal health information.
Your rights to keep your personal health information private
How we plan to use your personal health information, including who we might have to share it with, and what the law requires us to do.
This notice applies to everything we write down and keep about your PHI. We are allowed to change some of the information in this Notice of Privacy Practices. If we have to change this notice, the new rules will apply to all the information we have about you from the past and any information we might get or keep in the future. We will post a current copy of this Notice in our client waiting area and on our web site (www.or.easterseals.com). We will not mail you a new copy if we change it. You can ask for a copy of the Notice any time you want.
If You Have Questions About This Notice
If you have questions about this notice, please use one of the following methods to contact us:
Mail:
Privacy Officer 290 Moyer Ln NW PO Box 5193 Salem OR 97304
The following describes the different ways in which we are allowed to use and share your personal health information without your written permission unless Oregon State law does not allow us to share the information.
Treatment. We may use your PHI to treat you or for purposes related to your treatment. For example, we may share information with your doctor about your treatment progress or how you are doing. We may share your PHI with others who may help in your care such as another person in your family or the other parent. We may want to tell you about other treatments that are available to you or tell you about health-related benefits or services that might be of interest to you. Examples are support groups, parent education classes, community resources or durable medical equipment.
Payment. We may use and share your PHI in order to bill and collect payment for the services you receive from us. For example, we may talk to your health insurer to confirm that you are eligible for benefits and what those benefits may be. We may also tell your insurer about details regarding your treatment so your insurance company can decide if they will pay for your treatment. We may use and share your PHI to obtain payment from other people or companies that may be responsible for such costs, such as family members. We may use your PHI to send you a bill for services and items.
Health Care Operations. We may use and share your PHI to operate our business. Examples of health care operations would be measuring the quality of care you receive from us, using outside professional services, or carrying out cost-management and business planning activities for our practice. We may use and share your PHI to contact you to cancel or remind you of an appointment.
Disclosures Required By Law. We will use and share your PHI when we are required to do so by federal, state or local law.
Use and Disclosure of Your PHI in Certain Special Circumstances
The following categories describe unique ways in which we may use or release your personal health information without your written permission.
Public Health Risks. We may share your PHI with public health authorities, including Oregon Department of Human Services, that are allowed by law to collect information for the purpose of:
Reporting suspected child abuse, neglect or domestic violence.
Preventing or controlling disease, injury or disability.
Notifying a person regarding potential exposure to a communicable disease.
Notifying a person regarding a potential risk for spreading or contracting a disease or condition.
Reporting reactions to drugs or problems with products or devices.
Notifying a person if a product or device they may be using has been recalled.
Health Oversight Activities. We may share your PHI with a health oversight agency. Activities allowed by law can include investigations, inspections, audits, surveys, licensure and disciplinary action. They may also include civil, administrative and criminal procedures or actions, or other activities necessary to monitor our compliance with civil rights laws and the health care system in general.
Lawsuits and Similar Actions. We may use and share your PHI in response to a court order if you are involved in a lawsuit or similar proceeding. We may share your PHI in response to a subpoena or other lawful process by another party involved in the dispute. However, we will make an effort to inform you of the request prior to sharing the information.
Law Enforcement. We may release PHI if asked to do so by law enforcement officials:
Regarding a crime victim in certain situations, if we are unable to obtain the person’s agreement.
Concerning a death we believe resulted from a criminal act.
Regarding criminal conduct at our offices.
In response to a warrant, summons, court order, subpoena or similar legal process.
To identify/locate a suspect, material witness, fugitive or missing person.
In an emergency, to report a crime (including the location or victim(s) of the crime, or the description, identity or location of the perpetrator).
Serious Threats to Health or Safety. We may use and share your PHI to prevent a serious threat to your health and safety or the health and safety of another individual or the public. In this case, we will only make disclosures to a person or agency able to help prevent the threat.
Inmates. We may share your PHI to correctional institutions or law enforcement officials if you are an inmate or under the custody of law enforcement officials. These disclosures would be necessary: (a) for us to provide health care services to you, (b) for the safety and security of our organization, and/or (c) to protect your health and safety or the health and safety of other individuals.
Fundraising. We may send you fundraising solicitations for Easter Seals Oregon by mail. If you do not wish to receive such solicitations, you may choose to opt out of these mailings. To opt out, simply give us your name and address and we will kindly remove you from our fundraising list.
Your Rights Regarding Your PHI
You have the right to request that we communicate with you in a particular manner or at a certain location. For instance, you may ask that we contact you at work, rather than home. Our practice will accommodate reasonable requests. You do not need to give a reason for your request.
You may ask us to limit our use or disclosure of your PHI for treatment, payment or health care operations. For example, you may request that we share your PHI with only certain individuals involved in your care or the payment for your care, such as family members and friends. We are not required to agree to your request. However, if we do agree, we must honor that agreement except when federal or state law says otherwise, for instance, in emergencies, or when the information is necessary to treat you. You must make your request in writing. Your request must be clear and concise and must include what information you wish restricted. Your request must also include whether you are requesting to limit our practice’s use, disclosure or both and to whom you want the limits to apply.
You have the right to inspect and obtain a copy of the PHI that has been created by our agency. You may not, however, inspect the following records: psychotherapy notes; information compiled for use in a civil, criminal, or administrative action or proceeding. You must submit your request in writing. Our practice may charge a fee for the costs of copying, mailing and other costs related to your request. Your request may only be for records created by our practice. Our practice may deny your request to inspect and/or copy in certain limited circumstances; however, you may have a right to have this decision reviewed.
You may ask us to correct your health information if you believe it is incorrect or incomplete, and for as long as the information is kept by or for our practice. Any amendment request must be made in writing. You must provide us with a reason that supports your request for amendment. In certain cases, we may deny your request for an amendment. If we deny your request, you have the right to file a statement of disagreement with us.
You have the right to receive an accounting of certain disclosures we have made, if any, of your PHI. This accounting applies to disclosures allowed by law for which we are not required to obtain your written authorization. This list will not include the times that information was shared for treatment, payment or health care operations. The list will not include information provided directly to you or family members or information that was shared with your authorization. You must submit your request in writing. All requests for an “accounting of disclosures” must state a time period and may not include dates before April 14, 2003. The right to receive this information is subject to certain restrictions. The first list you request within a 12-month period is free of charge. Our practice may charge you for additional lists within the same 12-month period. Our practice will notify you of the costs involved, and you may withdraw your request before you incur any costs.
You are entitled to receive a paper copy of our notice of privacy practices. You may also obtain a current Notice from our website (www.or.easterseals.com).
You have the right to file a complaint. If you believe your privacy rights have been violated, you may file a complaint with our practice or with the Secretary of Health and Human Services. All complaints must be submitted in writing. You will not be penalized for filing a complaint.
You have the right to provide an authorization for other uses and disclosures. We will obtain your written authorization for uses and disclosures that are not identified by this notice or permitted by applicable law. Any authorization you provide to us may be revoked at any time in writing except to the extent that we have taken action in reliance upon it. After you revoke your authorization, we will no longer use or share your PHI for the reasons described in the authorization. Please note we are required to retain records of your care.
To obtain a form for any of the above requests or if you have any questions regarding this notice or our health information privacy policies, contact us using one of the methods listed under If You Have Questions About This Notice.
Empowering Disabled Adults Through Community: Weekend Retreat at Easterseals Massachusetts
Thursday, July 25, 2024, 4:57 PM
By Grant Stoner Last month, Easterseals Massachusetts celebrated its annual mentorship retreat for y…
By Grant Stoner
Last month, Easterseals Massachusetts celebrated its annual mentorship retreat for young adults with disabilities. The Empowering You 2024 Mentorship Retreat featured activities and events like workshops emphasizing community building, handcrafted art, games, and several guest speakers. For disabled individuals living in Massachusetts, this annual event encouraged embracing your disabled identity, building support throughout your community, and, more importantly, the capability to confidently and comfortably empower oneself.
Empowering You is the culmination of efforts from Easterseals Massachusetts’ mentorship programs Thriveand Brothers Against Discrimination (B.A.D). While Thrive is specifically for disabled young women, and B.A.D for young men, both groups seek to help disabled members promote and advocate for themselves as confident disabled members of society. I spoke with Easterseals Massachusetts Youth Program Manager, Desi Forte, who explored this year’s mentorship retreat theme and its varying activities, the importance of accommodating numerous disabilities, and her hopes for the future.
What Is Empowering You?
Confidence and self-worth are important tools for any individual. Yet, for disabled people that may struggle to feel welcome in a society that can still pose numerous inaccessible barriers, as well as general notions of ableism, empowerment is crucial for daily living. While Thrive and B.A.D regularly develop programs to create and refine self-help skills, Forte explains it was important to have the annual retreat focus on the overall theme of empowerment.
“The focus of the program was really around empowering people with disabilities by creating these communities,” Forte said. “With the theme of Empowering You, we were trying to find an all-encompassing theme that was broad in terms of scope of what we could cover. Really emphasizing the point around empowerment because that’s what these programs were built to do.”
The annual mentorship retreat took place over a weekend to allow attendees time to engage with activities. Forte notes that the Friday and Saturday were primarily reserved for members of B.A.D, while Thrive members met on Saturday and Sunday, with intentional overlap on Saturday for both groups to connect with one another. Forte explains that approximately 18 attendees within each program stayed for the event, with ages ranging from 15 to adults in their 50s. Yet, despite the vast differences in age, the event provided activities for all to enjoy.
“There were activities around the theme of empowerment,” she said. “There was an art activity where individuals created prints just showing what empowerment means to them. There were speakers around leadership within the disability community and beyond, and how they can be leaders in their lives. There was a lot of structured down-time as a way for these community members to connectwith one another to build organic mentoring and empowering relationships from the different generational communities being able to connect with one another.”
Empowering Through Care
Each annual mentorship retreat brings attendees to new locations, and Empowering You was no different. Hosted at Bridgewater State University, members and volunteers were given access to the facilities of the college campus, including residential halls. While this was a great way to directly bring disabled individuals into local communities, it also provided its own logistical challenges.
For many disabled people, traveling, and especially staying overnight, can be a complex process. From transferring medical equipment to extensive care regimes, many disabled individuals do not have the luxury to temporarily bring their care to other areas. Thankfully, Forte notes that the event was able to comfortably and successfully accommodate everyone.
“One of the strongest positive outcomes we always see, is that because this was an overnight event, we were able to support [Personal Care Assistant] needs if that’s something participants need to be involved,” she said. “[We also provide] other needs they may have that may be a barrier for them to participate in other overnight events. Just getting a chance to be overnight, away from their everyday environment, is always a strong part of this program.”
Some attendees, as Forte explains, are experiencing their first overnight event. And for others, these retreats are something to look forward to annually, allowing disabled individuals to connect with peers, as well as comfortably and confidently spend significant time away from their home environment. Forte notes that one of the most common pieces of feedback after each event is the joy with being able to stay overnight. “The feedback that we’ve gotten many, many times, and this year especially, is just being able to be in the space is something that those involved don’t get the opportunity to do very often.”
Moving Forward
Empowering You was not the only event available this year. Forte notes that Easterseals Massachusetts consistently offers numerous events and retreats, both virtually and physically, for disabled attendees and mentors alike. For disabled individuals, these create opportunities to build not only self-confidence, but a sense of community, something crucial for marginalized groups like disabled people. And as each event draws to a close, Forte is hopeful that they will continue with new themes and places.
“The hopes for future events are to just keep them going and to keep them growing,” she said. “To be able to keep doing these and offering these opportunities. The only concerns are always around funding and making sure that that’s available to support these programs, and to support these opportunities.”
Empowering You more than embraced its theme. The intersections of different mentorship groups, community building, and creating necessary tools to empower oneself were felt across the college campus. For disabled individuals, finding a sense of belonging internally, as well as through a community, are crucial components of long-term care. Without community, disabled people may struggle to engage within a traditionally nondisabled society. And while these events continue, self-empowerment and connecting with others will provide even more opportunities for disabled individuals to develop a sense of belonging. And as Forte explains, these retreats and events are integral to the disabled community.
“As a person with a disability myself, I completely understand firsthand what being involved in these programs means,” she said. “And really, what it means for me to be able to give back to this community that means so much to me.”
Taking Charge of Your Story: Why Representation Matters
Tuesday, July 23, 2024, 11:35 AM
By Christina Gann The first time I ever encountered a queer narrative in a video game was The Last o…
By Christina Gann
The first time I ever encountered a queer narrative in a video game was The Last of Us in 2013. The main game was released in June during LGBTQIA Pride month but did not include an openly queer narrative released in the main story playthrough. It was a prequel, an add-on character story that you needed to purchase separately after the release of the main game. When I started up that game, I had no idea that the story they were going to include for the main character Ellie William would have such a profound impact on me. The story took you on a heartfelt journey with Ellie’s best friend Riley that concluded with Ellie’s first kiss … and she kissed *gasp* Riley?! … another girl!
I was over the moon. I couldn’t hold back my tears and felt a sense of connection to this story and to the world around me in that instance. I cried because I felt validated and connected to this storytelling even if I had never experienced a queer teen romance of my own. Ellie was me. Teen romances are universal, a part of the human experience. To look for companionship and emotional security in another person is an experience that surpasses color, sexuality, ability and telling stories that include these universal experiences with diversity and inclusion weaves a tapestry interconnecting us as humans.
As rare as the queer perspective is in video games, good representation of people with disabilities is even rarer. Rich, diverse stories of characters with disabilities are desperately needed in mainstream media. Accurate representation is key to destroying limiting beliefs about the lives of people with disabilities. Stereotypes and false beliefs created by misrepresentation give a false impression of what it’s like to live in the world with a disability, creating disconnect and isolation. Disability is still regularly served up as a trope to invoke fear in the horror genre in both video games and cinema. Sending a message that disabled people should invoke fear instead of celebrating the life of the individual and the way they approach the world in different ways. This needs to be replaced with characters and stories that resonate differences to be celebrated.
When I was a young adult, my family and I would go to medical conventions to learn new information and technologies that could help accommodate my needs while living with short gut syndrome. Short gut syndrome is so rare that these conventions were the only way that I ever got to see or meet other people who lived a similar experience to my own. I felt included, accepted and understood more there than anywhere else. Meeting all these young people like me who had the same challenges, the same desires, same hopes made me see that it was all possible if I was allowed to exist without the constraints and limitations put on me.
Seeing representation of yourself is healing, especially when you exist outside the boundaries of the status quo. To be able to relate and identify with the rest of the world is profoundly interconnecting. Everyone wants to feel seen, everyone thirsts to be understood and accepted as they are. When we tell stories with accurate representation, we create an understanding, and through understanding, we create unity. The stories we tell, the way in which we represent ourselves to each other is so vital to the way in which we relate to each other face to face.
We believe what we see and this becomes our reality. I was taught at a very young age that being different meant danger. That being disabled meant that you were limited in what was possible. That accepting disability meant accepting defeat. I grew up as a witness to a world that mistreated, misrepresented and abandoned the disabled. I struggled to relate what I saw to how I felt growing up disabled. I didn’t feel like I was limited but that the world was not made for people like me. I remember going into my school counselor’s office and being told what I was capable of achieving. What was possible and what was not going to happen for me given the limitations she created for me out of assumptions fueled by societal views. I was force fed my limitations on a platter with no exceptions. Without allowing me to determine my path and how I would approach life in my own unique way. Without giving me a chance to thrive.
I went on to dismantle every limit put in front of me. I have done things I was told were impossible.
Someone told my story, someone else limited my potential and capabilities without my permission. No one should have their story stolen or misrepresented. Misrepresentation creates false images and harmful stereotypes of people and their lived experiences. We are still fighting for accurate representation at the intersection of queer and disabled. To have a hand in telling our own stories is vital to diverse and suitable representation that changes how we are viewed and treated in the world.
When we leave room for all stories to be told, we open the door to alternate reality, one that aligns with our humanity, compassion and understanding. No one should have their story or their potential snatched away. We all deserve the chance to thrive and live out loud and proud of all that makes us who we are. Diversity, accurate representation and inclusion bridges the gap between what we think we know about each other and what connects us to each other, including us all in the conversation.
Advocacy makes our stories and existence visible and we are infused back into the pack as one community supporting one another through our individual experiences. When you are ready, tell your story as loudly as you can because I assure you, someone out there needs it so that they can have the courage to tell their own.
Christina Gann is a content creator, artist, and scientist based in Colorado. They love horror movies, gaming with friends, and their dog, Oreo. You can follow Christina on Twitch, TikTok, Instagram, and X.
Disability Pride, Queer Pride, and the Medical Model
Thursday, July 18, 2024, 12:27 PM
By Mids Meinberg As we enter into Disability Pride Month, I believe it is important to think about t…
By Mids Meinberg
As we enter into Disability Pride Month, I believe it is important to think about the ways that disability and queer rights have similar struggles. In particular, both have a history of navigating the divide between the medical and social models.
The medical model is the more traditional model for thinking about both disability and queerness. Essentially, it proposes that these are medical conditions that require treatment and, ideally, a cure. The social model, in contrast, proposes that disability and queerness are both identities, which exist to be embraced — not erased.
Psychology is a relatively young science, but in its foundational texts, homosexuality is described as a mental pathology. Within the first DSM, released in 1952, homosexuality is placed in the same category as pedophilia and sadism. The DSM-II, originally released in 1968, kept homosexuality as a mental illness, but only during the first six printings. (Psychiatry.org)
Between the sixth and seventh printing, the gay liberation movement had begun in earnest, spurned by the famous Stonewall riots that led to the creation of queer Pride. As the movement gathered strength, it led to the seventh printing (in 1973), revising the description of homosexuality to no longer describe it alone as a psychiatric disorder. It did, however, maintain that a person with homosexual desires was a person who needed treatment.
This would remain the stance of the DSM until the DSM-5, released in 2013.
While queer Pride began in 1970, starting on the anniversary of the Stonewall riots, Disability Pride did not begin until 1990, in celebration of the passing of the Americans with Disabilities Act. It did not begin to have widespread celebration until the early 2010s, and is still not nationally recognized.
Despite the successes of the struggle for the rights of both disabled and queer people, there is still much to go to assure full equality for both groups. The medical model is still in common practice for many disabilities, and indeed is held by some disabled people as well. Our society creates barriers for disabled people despite the laws passed like the ADA, preventing disabled people from being able to live their lives to the fullest. And while the blame lies on these barriers, disabled people are constantly told that it is their disability at fault.
Queer people have resisted the medical model since it was first applied to them, and efforts to pathologize queerness have always been rooted in discrimination and hatred towards queer people. Despite this rejection of the medical model, some queer people do require medical technology in order to best fit their desired identities, which is most visible in trans people.
While it is entirely possible to transition one’s gender without the use of any medical tools, options like HRT, gender-affirmation surgery, and facial remodeling are very useful in helping a trans person to fully identify as their true gender. This use of medicine does not mean that the medical model applies to trans people, though.
Meinberg
I use medicine to help ameliorate my depression and anxiety, but this does not mean that my depression and anxiety are inherently medical issues. If I lived in a society that was more accommodating of depressed people or anxious people, I might require less medication. But even if I chose to continue using medication, that is merely my choice in how to best navigate my neurodivergence so that I can truly be myself.
I would never want to be cured completely of my depression. For all of the troubles it has caused me, it is still a part of me and a part I am deeply proud of how it has helped to shape me into becoming a better person. The idea that I would be better off if I had never had depression is simply incorrect. Some depressed people feel differently though, and that is a valid perspective to have. There is no denying, though, the transformative effect of having a disability.
Similarly, there are some trans people who wish they were assigned the correct gender at birth. Transitioning is difficult due to large social barriers and lack of affordable access to necessary treatments, and being assigned the correct gender at birth is much easier. However, nearly all transpeople are happy that they have transitioned and the important part is that they have become who they wish to be. (Gender GP) In addition, for many trans people I know, their transition is an important part of their identity — not simply being the right gender, but being a trans person of the right gender.
This is because these trans people are able to find community together via their transness and are able to develop new models of looking at their gender via the lens of being trans, much in the same way that people with queer sexualities look at relationships differently and are able to form different kinds of romantic and sexual bonds because they are not the default.
As disabled people, we can apply many of these lessons that queer people have learned to our own struggles and our own identities and learn how best to create a space in the world for us. The social model recognizes that disability is a part of disabled people’s lives and it changes us, not necessarily for better or for worse, but into who we truly are. Even if I were to no longer experience any symptoms of depression, I would still have been shaped by that depression and I cannot write it off of my identity.
An ableist society seeks to shame us for our disabilities, seeking to reinstate the ugly laws and push us away from visibility, to pretend like we don’t exist – and that when we do exist, our disabilities are problems to be solved. For a very long time, this was also the case for queer people; society wished for queer people to be put back into the closet, to be denied their existence and their rights. But like queer people, disabled people have continued to fight, and so long as we have pride in our hearts and know that we deserve to exist, to be seen, to be counted as equals no matter what society has to say, we will push forward into a better tomorrow.
Happy Disability Pride, everyone.
Mids Meinberg is a writer and game designer working out of New Jersey. They have an AA in Creative Writing from Brookdale Community College.
Surprise! I have a prosthetic eye – that I choose not to wear.
After losing my left eye to cancer in 2022, I had various eye patches for 6 months while my face healed. When I healed enough, we started the process for a prosthetic. My sticker, as my 4-year-old calls it, is beautiful. It looks incredibly realistic although the eyeball doesn’t move.
They put the final product on my face in June 2024. I thanked them, walked out of the doctor’s office, and broke-down.
Covering my “socket” as we call where my left eye used to be, was an overwhelming reminder of what I lost. Of what I had to fight. Of what I’m still fighting and recovering from. It felt like I was hiding.
My face, my scars, they are part of my story.
Do I get stared at? Yes. Do I love kids asking, “why do you have one eye” at daycare drop-off, at the playground, and at family gatherings? No.
Do I want to hide my face, my disability? NO!
SUPPORT YOUR KIDS IN ASKING QUESTIONS! I have the privilege of helping children be more inclusive, accepting, and engaging by answering their questions. That kid on the playground that is different – more times than not, they would rather be asked a question than avoided and ignored.
Let your kids ask questions, even when it’s uncomfortable for you. Teach them to satisfy their curiosity about differences while asking what they have in common with others.
When I answer kids, I acknowledge that I had something hurting me, that we said goodbye to my eye and now I don’t hurt. But, even though I only have one eye, I love baseball, swimming, riding bikes, reading, and playing with my son. I ask them if their hair is straight and note mine is curly. We are all different and that’s okay.
July is Disability Pride Month. Celebrate with me by building an inclusive society that does not isolate, disrespect, ignore, and limit the potential of all community members.
Liz Meckes is a dedicated nonprofit fundraising executive, known for her enthusiasm for people and her deep love for Philadelphia sports teams. Her career began with creating memorable fan experiences for the Philadelphia Freedoms of World Team Tennis. This passion for connecting with people naturally led her to a career in fundraising, where she has excelled in building relationships at Easterseals. Diagnosed with an invisible disability, Crohn’s disease, in her teens, causing chronic fatigue and nutritional challenges, and eventually leading to kidney failure. After receiving a kidney transplant in 2014, she went on to have her son in 2020. In 2021 and 2022, she faced squamous cell carcinoma in her left temple sensory nerve, resulting in the loss of her left eye. She is adapting to single-eye vision and proud to continue to be a member, ally and advocate for the disability community.
Becoming a Chef at Easterseals South Florida’s Culinary Arts Program
Thursday, July 11, 2024, 4:03 PM
Sebastian Millan loves to cook Italian dishes like pasta and pizza. He also enjoys making Cuban food…
Sebastian Millan loves to cook Italian dishes like pasta and pizza. He also enjoys making Cuban food like arroz con pollo, pulling from his own heritage. In 2021 at the Easterseals South Florida Youth Culinary Arts Summer Camp, Sebastian discovered a passion for cooking, learning skills needed to craft a diverse range of cuisines.
Sebastian
The Youth Culinary Arts Summer Camp is a seven-week program for students with disabilities, including autism, in grades 6 to 12. Participants like Sebastian train hands-on with experts in the culinary arts, learning practical job knowledge and financial literacy to aid them in transitioning from school to employment and independence. The Easterseals Academy staff noted how Sebastian’s work in the kitchen has helped him excel in math and build leadership skills.
Easterseals South Florida offers many opportunities for educating youth during their summer camps, including field trips that include experiential learning. “We’re always seeking site partners that specialize in sensory opportunities and other enrichment offerings. So the students enjoy a lot of outdoor and indoor field trips. They bring back a great deal of knowledge and gratitude. They get to work with animals, they get to enjoy performances…so it’s very fulfilling and very diverse,” says Pietro Bonacossa, Vice President of Development.
After summer camp ended, Sebastian wanted to continue cooking. He then joined the Easterseals Culinary Arts High School Program, which also includes the hands-on training from summer camp alongside traditional classroom instruction. Academic content follows the B.E.S.T. (Benchmarks for Excellent Student Thinking) Standards and is tailored to meet individual student needs. Students can work together in small groups on different stations, like sanitation, food prep, and food service. They also have the opportunity to earn a ServStaff sanitation certification and learn Culinary Arts skills following the ProStart Curriculum. High school graduates can stay enrolled in the program until the age of 22.
Through the support of the Easterseals family, Sebastian started an internship last year at Nicklaus Children’s Hospital in Miami, working in their dining services department. He’s gained further skills in customer service, food prep, and creative food presentations. Earlier this year, the hospital hired him part time with benefits, and he is now working full time for the summer.
Sebastian is but one example of the importance in creating inclusive, equitable spaces where people with disabilities can learn and thrive alongside their peers, gaining tools that foster independence and teamwork.
Sebastian shared that his favorite part of being a chef is the collaboration between everyone that works in the kitchen, and being able to simply do what he loves with the support that he needs. Sebastian’s dream is to own a breakfast food truck. If that’s successful, he wants to open his own restaurant. He said, “The people at Easterseals have a future, they can learn new abilities to have their own future and follow their dreams.”
To learn more about the incredible work of Easterseals South Florida, visit their website. Thank you to Sebastian Millan and Pietro Bonacossa for their contributions to this blog post.