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Helping Children Learn about Differences in my role as a Librarian
Amy Rosenfeld-Kass
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The Robustness of the System for the Rights of People with Disabilities
Nethra Silva Vision for A PersonCentered Public Benefits System in the new Normal of COVID and Beyond
Nicole Leblanc Disability Disclosure
Michelle Steiner
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Rules for Interacting with People with Disabilities
Cam Wells Love in the Time of COVID-19: Taking Back My Voice from the Dark Side of Online Dating
Miranda Belle Brent
Storm Warnings: An Interview with Paul Timmons
Molly Wiesman
The Guilt that Comes with Chronic Disability
Jessica Logan
Iwork as a librarian in a nursery school in New York City. As a librarian in a nursery school, I do storytimes with books and puppets. I also create my own stories with puppets. I tutor a child on Zoom in reading and literacy
I read a variety of books to the children, and part of my job as their librarian is to read books which depict diverse characters, and also depict different characters such as female firefighters, children in wheelchairs playing at an accessible playground, and characters with all shades of skin color, just to name a few.
In my role as a librarian, I feel it is important to read books which talk about the concept of kindness and fairness. Exposure to these kinds of books will only help children grow up to be adults who have learned to accept people for who they are, as well as be able to see beyond an individual’s disability. (I do not personally like the term disability. I prefer the term altered ability). Everyone has strengths and weaknesses, which is what makes us unique. It is so important to have diverse books available for young children, and to have conversations with children at a young age (appropriate to their age level) about all kinds of differences. It is equally important to help children to also see that they are each special and unique in their own way.
There are a lot of picture books for young children that depict diverse characters. During the worst part of the pandemic, (December of 2020), I was asked
to adapt a Daniel Tiger book to go along with a TV episode. The book, Daniel and Max Play Together, is about Daniel Tiger meeting a friend Max in school. Max happens to be autistic, but Daniel learns that even if someone is different, you can still be friends and play with them, and find a way to get along with them! It was a good experience writing the book, and I had a 6 week deadline to get my manuscript in. It was also a good distraction from all the news, which was a good thing for me as well. (The book is available at Barnes and Noble and on Amazon.)
Giraffes Can’t Dance is about a giraffe that is teased by the other animals because of how he looks, and because he does not dance like the others. Gerald feels sad. Then, one day, Gerald the giraffe hears some music and dances in his own special way. The other animals notice this and are excited for him and Gerald is excited as well. (This book helps children to see that you can do things in your own special way, and there is no one right way to dance or move).
Another book by Penfold, All Are Welcome, helps children to see that there are many kinds of people, and everyone should be welcome! One day recently, I read this book to 3 and 4 year olds. The words “All Are Welcome” are repeated throughout the book, along with diverse pictures. I invited the children to say the words “All Are Welcome” with me, and, as they did, they got louder and louder. At the end of the story, I asked the children to stand up, hold
hands (and teachers and adults, too) and together, as a group, we said in unison, “All Are Welcome!”
Asimilar book. All Are Neighbors, also by Penfold, is about people in the neighborhood, and how they are a community, but also diverse. The book includes pictures of all kinds of people!
Here are some other great books for kids that include great messages about diversity:
The ABC’s of Kindness. This book goes through each letter of the alphabet and talks in a simple way about being kind.
The book It’s Okay to be Different is about being different and has pictures of diverse characters as well. It is a good read aloud book and can bring up a lot of discussion.
Yet another book, Should I Share My Ice Cream?, By Mo Willems is a book that encourages sharing. We want to teach children about sharing and taking turns.
One of my other new favorite books, I is For Immigrants, by Alko, goes through each letter of the alphabet, depicting what immigrants might see when they are here in the States.
Almost any book can have a diverse lens to it. For example, take Chicka Chicka Boom Boom by Martin. When reading the book to the children, you can ask the children what their name starts with and then point out that we all have names - some of them are different and some of our names are the same. One can also focus on how our names are special and unique to each of us.
Another book, The Little Grey Digger by Sonica Ellis is about a grey digger who wants to be yellow like the other diggers, but realizes that it was fine to be grey, and he did not have to be like the others. You can just be your unique self. This is what we
want to empower young children with, that they can be themselves and accept others for who they are as well, be able to see beyond differences, and in learning these skills, respect others for who they are, as well as their differences. And teaching young children these skills through diverse books and a classroom environment with diverse materials for the children to explore (i.e., a pretend play wheel chair, or pretend crutches, etc.) or an African American baby doll, etc., is just the beginning of helping children to learn to see past differences when they encounter them.
Finally, if children do ask questions about why someone is different, have a conversation with them, and help them to learn to feel comfortable talking about differences. But that can only happen and take place if we as adults are role models for the children we teach and nurture, and make the time and space for children to talk about the above topics.
To see a video of Amy Rosenfeld-Kass reading one of the books mentioned in this article, Daniel and Max Play Together, click here
The legal system is a spectrum of certain establishments which regulate the certainty and the quality of life. Legal perspective is an objectively interpreted framework that has been executed in the law rather than polishing some moral perspectives. Morality is an individualized identification. More of the moral perspectives are subjective and scientifically challenged.
The term “disability” is defined in a number of ways depending on the criteria which has been taken into consideration. In accordance with health and medical perspectives, any disability has its own identification as a health condition. In legal perspective, rights, participation, recognition, and accessibility are thoroughly scrutinized, although unfortunately the vast majority of individual experiences of people with disabilities elaborates the loopholes in rule of law. Even though the law expects it to be a fair and justifiable doctrine, its execution has a number of deliberate or accidental breakdowns.
According to the United Nations, human rights can be defined as the rights that every individual is entitled to relish during their lifetime regardless of race, ethnicity, gender, nationality, religion, or any such categorization. The United Nations organization has created a code which was universally and internationally protected. This code included the
rights in certain areas and mechanisms to ensure their protection. The foundation for this legal body was established in the General Assembly held in 1945 and 1948. The introduced Charter of the United Nations and the universal Declaration of Human Rights were a clear elaboration of the rights for women, children, persons with disabilities and other vulnerable groups who had been severely discriminated against and restricted for a period of time (Source: UN official web page). Major adaptations have taken place in international human rights treaties since 1945. As a result of these expansions, The convention on the rights of persons with disabilities (2006) was established with its optional protocol in New York. Most remarkably the convention could create an attitudinal hurricane changing the charitable, medical, and social perspectives towards persons with disabilities. The convention on the rights of persons with disabilities has introduced certain policies (50 articles) to ensure the rights of individuals with disabilities.
This document includes the definitions of reports, depositories, and amendments. Article 5 of the convention elaborates the concept of equality and non-discrimination. The basis of this article repeatedly defines the concept that I have stated a while ago which is “rule of law.” British jurist A.V. Dicey has introduced a few concepts under this rule. The second rule of Dicey states that no one is above the law. This concept establishes the equality between genders, social classes and any such categorizations. Later, Lord Bingham drew out several ingredients from the concept of rule of law. Ingredient number 3, defines how the laws of the land need to be applied to all. Specific to this case is that the concept has elicited
the term “equal.” Also, according to the explanation of Lord Bingham, human rights need to be protected and of course they must receive adequate protection. This exact concept goes hand-in-hand with Article 12 of Fundamental Rights of Sri Lanka. The 3rd chapter of the constitution of the Democratic Socialist Republic of Sri Lanka has introduced several fundamental rights for the well-being of the citizens living in the territory. Article 12 is obvious about the laws relating to equality and discrimination. Article 12, Section 1 states that “all persons are equal before the law and are entitled to the equal protection of the law.” Section 2 elaborates how the discrimination needs to be avoided treating everyone equally. Protection of the Rights of Persons with Disabilities Act, No. 28 of 1996 was introduced by the Sri Lankan parliament in October that year. Section 23, subsection 1 has constituted the law which has been enacted and manifested through the other resources. Section 23 of the Protection of the Rights of Persons with Disabilities Act and Article 6 of the convention define the rights of women with disabilities. Gender biases and discrimination can be widely discussed on the grounds of execution in relation to these declarations. This concept defines in Section 2 of Article 12 of the Fundamental Rights of Sri Lanka. It has been discovered that girls and women
with disabilities have experienced very traumatic events in comparison to boys and men with disabilities. These measures establish the fact that fundamental freedom needs to be a transparent and a realistic presentation. Article 13 of the convention brought out a remarkable legal point which requires the attention of everyone including the legal professionals - “access to justice.” This states that every person with a disability is entitled to be served with justice, the way that it has been done for everyone else. Also, Article 14 has a descriptive statement on the right of persons with disabilities to access liberty and security.
Gender is a concept, simply a certain criterion created by humankind. According to the United Nations (IASC Guidelines, 2019, inclusion of persons with disabilities in humanitarian action), 1 in every 5 females experiences a disability during her lifetime. According to the World Health Organization estimates in 2013, 30% of women (15 years & above) have been subjected to physical/sexual violences. Adults with disabilities have experienced violence 1.5 times higher than typical individuals, while individuals with intellectual disabilities experienced violence four times higher than typical individuals. (Hughes,
Bellis, Jones, Wood, Bates et al 2012). Article 16 of the Convention on the Rights of Persons with Disabilities provides a descriptive analysis about their rights to have an independent life, which is completely free from exploitation, violence, and abuse. Section 1 of this article has a specific statement about the genderbased aspects. Section 5 of this article has kept a close eye on the rights of women and children with disabilities in relation to violence and abuse. States and responsible parties have been directed towards the policy making environment and the legislative process to ensure the execution of these written laws. The concept of gender biases cannot be framed only to males and females. The concept of LGBTQ+ recently came into global conferences in relation to the rights and the perspectives of people that are contributing towards the constitutions of the countries. LGBTQ+ refers to individuals who are Lesbian (emotionally and sexually attracted women), Gay (emotionally and sexually attracted men), Bisexual (emotionally and sexually attracted to more than one gender), Transgender (transferring to their opposite gender naturally) and Queer (not providing details on their gender identity). The plus mark was included to view the LGBTQ concept in an inclusive manner. In 2021, 29 and 34 countries have provided equal legal identification for marriage and monosexual relationships respectively. According to the Universal Declaration of Human Rights of 1948, discrimination on the grounds of gender also violates the rights of individual freedom.
Women with disabilities and LGBTQ+ individuals experience certain challenges compared to typical individuals. Restricted social participation, reduced opportunities to build up an independent career, limitations for education, mythologies and violence are some of the burdens that most of them have to cope with, yet it is difficult to overcome the burdens of maintaining awareness and up-to-date knowledge of legal procedures.
Discriminations are very individualized, yet some of the subtle factors are shared and commonly identified. Educational rights of children with disabilities have been widely discussed in many international platforms. Article 24 of the convention has a multi-sectional description about disability and the right to be educated. One position paper published by UNICEF in 2012 expressed their views on a rights-based initiative. The fundamental expectation of UNICEF is based on a very inclusive approach respecting the rights of children with disabilities. According to the position report of UNICEF, two thirds of children with disabilities have been discriminated against versus typical children in pre-school enrollment. This means that only one third of kids with disabilities have been accepted into pre-schools. Everyone must be considered under the law of human rights regardless of their physical and mental capacities. Creating an accessible and feasible environment is really a responsibility of the government (UNICEF). The individual or the family of the individual is not required to create a platform for themselves to live the life that other people are living with their loved ones. If someone is demanding and expecting them to create their own platforms for the typical enjoyment of life, that is unjust and illegal. The law itself states that every person needs to be treated equally. This relevant fact does not make the law radically different. “Equal” in the sense that everyone needs to be treated with equal opportunities. For instance, if only the typical children are enrolled into educational settings, children with disabilities will be left out with no educational access. They simply lose a fair opportunity to achieve their dreams. If stairs are to access a higher floor, either an elevator or a ramp needs to be accessible for people with mobility impairments. It is unfair to expect a person with a wheelchair to use stairs to reach his/her destination. Most people would consider it an exceptional opportunity given to people with disabilities, yet it is crystal clear that individuals
with disabilities are receiving the exact opportunity that everyone has received. Inclusive education has become a well-nourished concept with the influence and intervention of UNICEF and laws related to disability. UNICEF has elaborated three approaches for education relying on its notion: (1) Segregation, an impairment-based approach. This approach focused on impairment and how to address the core of it. (2) Integration: mainstream settings are made accessible for children with disabilities as long as they are capable of fulfilling the demands. (3) Inclusion: this approach was adapted to the system considering the external adjustments - not only accessibility, but also the way of enabling the non-biased participation was widely considered.
Inclusion is more of a spectrum. Article 7 of the Convention on the Rights of Persons with Disabilities has given a descriptive view on how to treat children with disabilities on an equal basis as other children. Section 3 of Article 7 provides the idea that children with disabilities are entitled to receive appropriate assistance in relation to their age. Education is a right not a benefit. Disability inclusive communication guidelines presented by the United Nations have an optimistic view on the mode of communication. Communication shares a strong link with education. The United Nations believes that this approach would reduce unnecessary discriminations and biases. As
it has been estimated and stated in the disability inclusive communication guidelines, 15% of the world’s population have some kind of disability. Also 1 out of 10 children is diagnosed with a disability. Further, as it has been stated in the disability inclusion strategy entity accountability framework, choosing an appropriate communication medium or a method needs to be one of the principal considerations. Braille documents, audio recordings, sign language interpreters, subtitles, and augmentative and alternative communication methods are some of the well-known strategies utilized to make the communication accessible for everyone.
Avery few countries such as United Kingdom, Israel, New Zealand, and Canada, have uncodified constitutions. They are uncodified in the sense that the law has not been written in a single legislative document, yet it can be found on statutes and other legal tools. Most of the other countries including Sri Lanka have a codified constitution where the laws are written in a single document. Regardless of the legislative procedure, every nation has a binding responsibility towards their citizens to rule the country in good faith protecting rights and ensuring equality.
Sueur, A. L., Sunkin, M., & Murkens, J. E. K. (2019). Public Law: Text, Cases, and Materials. Oxford University Press
Protection of the Rights of Persons with Disabilities Act, No.28 of 1996
Convention Rights of Persons with Disabilities
Disability-Inclusive Communications Guidelines (United Nations)
World Health Organization 2013
IASC Guidelines, 2019, inclusion of persons with disabilities in humanitarian action.
International Labour Organization Guide on LGBTQ+
Chapter III – Fundamental Rights of the Democratic Socialist Republic of Sri Lanka
As the world continues to deal with the ongoing COVID-19 pandemic and its longterm fallout due to long COVID, we should use this crisis to redesign the service and public benefits system to be more person-centered to the needs of a growing disability population.
One radical way to do this is to eliminate asset and earnings caps in all public benefit programs such as food stamps, SSI-Supplemental Security Income, SSDI-Social Security Disability Insurance, Medicaid, Long Term Care Medicaid, Section 8 Housing and much more. By doing this it will save the government and people with disabilities time, money, and the stress that comes with receiving public benefits. Treating income supports like SSI and SSDI as universal basic income will greatly improve the health and mental health of people with disabilities and the general population. This is especially important for those who are dealing with the disabling effects of long COVID that have led to chronic health issues limiting peoples’ ability to work. In some cases, it has led to people being let go from jobs and becoming too disabled to work. The main idea behind Universal Basic Income is to lessen peoples’ stress levels by giving peace of mind that your basic needs are covered.
A second major reason asset and earnings caps should be eliminated in public benefits is that it will give job developers and people with disabilities
the opportunity to try new things they may not otherwise have attempted under the current earnings and asset limit rules. One example of this is creating a public benefit system that supports people with disabilities to be part of the ever growing gig economy as sole proprietors or have their own business.
The world of employment has changed significantly since these programs were created in the 1950s and 1970s. It is long past time for our social safety net programs to be flexible to reflect today’s current challenges and realities of being disabled in the 21st century. Only when we do this will we achieve the full promise of the Americans with Disabilities Act and State Employment First policies which exist with the purpose of making competitive and integrated employment the first option when serving persons with disabilities of working age.
In the area of work incentives, on a more modest level we can take steps to promote personcentered employment by moving the SSDI program from an all or nothing cash cliff to a $1 for $2 benefit offset like we currently have in the SSI - Supplemental Security Income Program. How this would work is your Social Security Disability Insurance check will go down $1 for every $2 you earn above Substantial Gainful Activity (SGA) which describes a level of work activity and earnings. The current SGA limit in 2022 for someone who is blind is $2260 and $1350 for non-blind. A policy like this could increase the numbers of people with disabilities working in jobs that pay a livable wage because it would lessen the anxiety that comes with just making enough to go off benefits but not enough to be self-supporting. Under this model people with disabilities like me would make out better and be
able to get ahead in today’s economy.
Another major initiative would be to expand work incentives for all people with disabilities and give people who are not blind equal access to the same allowable deductions for impairment related work expenses. The disability community would also greatly benefit from eliminating asset limits in all forms of public assistance. Changes like this could greatly benefit our society right now given the workforce shortage due to long COVID, less immigrants coming into country, and baby boomers retiring. Hiring people with disabilities is a great way to boost morale and foster community inclusion and economic independence in our society.
As we look at ways to remove barriers to saving money for people with disabilities, removing the age limit for The ABLE Act would greatly increase the numbers of account holders in order to make this program sustainable and keep fees low. The ABLE Act was created to give people with disabilities the ability to create tax-advantaged savings accounts called ABLE accounts which can be used for disability related expenses like education, housing and transportation. People with disabilities are able to save money without losing their eligibility for federally funded benefits such as Medicaid or Supplemental Security Income (SSI).
Given that so many people with disabilities qualify as low income, developing a way to have state governments or the federal government match for the first $5000 a person deposits into an ABLE account would greatly benefit our community. This is one of many ways to increase the use of ABLE accounts among people with disabilities and their families. We must also showcase the benefits of
ABLE accounts to employers who hire people with disabilities.
In the area of HCBS - Home-Community Based Services or Long-Term Care reform, we must develop a universal long-term care buy-in program so that seniors and people with disabilities can have access to Medicaid Waiver Supports like service coordination, home, community, respite,
transportation, clinical and employment supports to live in the community. One way to do this is to offer a sliding scale where people would pay based on annual or monthly income. Also, have everyone pay into the system during their prime working years, just like we currently do for social security system where those with high incomes pay more than those with lower incomes.
In the area of eligibility for public benefits, it would be important to have the criteria be based on the federal definition of developmental disability and the Americans With Disabilities Act (ADA) with no IQ limits, long waitlist or crisis driven funding priority hoops to jump through in order to access
services. The less red tape to jump through in terms of eligibility, the easier it is for families and people with disabilities to access. The COVID-19 pandemic over the last few years has shown us the great benefits of loosening government rules and red tape that make the lives of people with disabilities easier. Having less red tape can also save states and agencies time and money. Universal access to HCBS (Home and Community Based Services) supports will lead to better health outcomes by allowing seniors and people with disabilities to live in their own homes instead of in large, segregated settings like institutions, group homes and nursing facilities.
On top of financial support, we must develop a comprehensive, unlimited paid leave program to support families of people with chronic health issues and long haulers as we deal with the long term fallout of the COVID-19 pandemic. Paid leave will go a long way in mitigating the impact of future pandemics on working families and those with chronic health issues. It is essential now more than ever that any paid leave benefit be open to all workers both full-time, part-time and contracted. No one should have to choose between a paycheck and recovering from illness. COVID is teaching us that the era of going to work sick is over, and we must allow people to focus on recovery while ill. In addition, it is also showing us how fragile our health can be - one day we can be perfectly healthy, and the next day wake up disabled with chronic conditions. Recently I read a story on how pushing Long Haulers too hard can cause their symptoms to be aggravated. To have a successful recovery from COVID we must give long haulers financial peace of mind so they can stay focused on getting better and not worry about money. As a society, if we force long haulers to rush back to work too soon, it could make their health and recovery worse. (https:// www.nytimes.com/2022/04/18/opinion/long-
covid-cdc-fatigue.html)
Developing a comprehensive paid leave and short and long term disability benefit system outside the typical government social safety net is essential for our society as we look at changes to worker benefits in the aftermath of the COVID-19 pandemic. It is of the utmost importance to have financial plans and programs in place to support long COVID recovery. A return to the normal way of doing business is not an option, and we must fight for a future that includes living with disability and chronic conditions in all aspects of community life across the lifespan.
As employers continue to struggle to find workers as advocates, policymakers and disability employment providers, we must meet the moment and go above and beyond in encouraging employers to hire people with disabilities, while also removing work disincentives that give families peace of mind that they will not be worse off by working part time or getting paid at wages of $15+ an hour. This will go a long ways towards better employment outcomes as students move from school to adulthood. Employment should be front and center during the transition into adulthood.
Employers can play a big role in advancing personcentered employment outcomes by working with job developers to carve out and design jobs that match job tasks to a person’s strengths. This allows society to create jobs that are strength-based and person-centered for people with disabilities. We must get more employers to embrace this idea because it could greatly solve the current labor shortage. In addition, this strategy could also help accommodate the millions of people with Long COVID who can no longer work full-time and may need to change jobs to work that is less strenuous. Having systems of support that force people with disabilities to live in poverty is not person centered.
There is no better time than the present, during a mass disabling pandemic, to reform our social safety net to be more person-centered in order to foster true inclusion, self-sufficiency, independence, pride, and sense of belonging for workers with disabilities who give as much as they take. The disability community is ready, willing, and able to be a solution to the workforce shortage and skills gap in the 21st century economy. Paid leave is at the heart of person and family centered care.
Employers can support workers with disabilities and COVID long haulers by providing accommodations like flexible work schedules, reduced workload, paid leave, long term disability, unlimited sick days, or paid time off and job restructuring to name a few. Job sharing, or splitting the duties of one job between two people is another person-centered way to employ workers with disabilities especially given that not everyone has the capacity to work 40 hours a week. As we are seeing, long COVID is leading to major reductions in the size of the workforce both in U.S and worldwide.
Government restructuring of the public benefit system could be beneficial, particularly in the wake of the COVID pandemic.
(https://www.telegraph.co.uk/ business/2022/07/27/long-covid-shrinksworkforce-1100Long Covid shrinks workforce by 110,00000/)
Deciding whether I want to disclose my disability or not is one of the most difficult parts of having one. My learning disability is hidden, and this gives me the privilege of being able to choose the audiences to which I disclose my disability more easily than a person with a visible disability. Each option has its advantages and disadvantages and depends greatly on the situation. Some of the advantages include getting the support I need and the chance to connect with others. The disadvantage of sharing your disability may be that people have a fixed mindset on what a person with one can do, and it can lead to others using it against you. Disclosing your disability is a skill that takes practice and time.
Choosing my audience is the first step in deciding whether or not to disclose my disability. When I was in school, many professors and other school officials needed to know that I had one. In college, I was registered with the office for students with disabilities, but it was my job to let my professors know. Giving the school officials this knowledge has helped me to get accommodations such as a notetaker, extended test time, and tutoring.
I learned the hard way that it’s not beneficial to tell all of your peers that you have a learning disability because of the stigma. I can remember other students not believing that I had one and
comparing me to others with my disability who could do things that I can’t. I also had peers who thought that I was being given an unfair advantage or thought I was somehow getting the answers for tests. Other people thought that when I used tools such as a calculator in math class it was cheating.
It’s helpful for my employer to know what my disability is and what support I need. The staff
I work with knows that I can’t help with math, but can be an asset with reading and other job duties. When I talk about my disability, I try to talk about it calmly and explain the ways that it could affect my ability to do a job.I also try to emphasize what strengths I can bring to the job. Employers sometimes look at my learning disability as a risk rather than asset. I have not always had an understanding of employers’ attitudes towards my disability. Many times, they thought I was making it up or screwing up on purpose. I’m blessed to be with an understanding employer who not only understands my ability but can see the value that I bring.
When I’m in the community, I use my discretion on whether I tell or conceal my disability. Often when I disclose it, people don’t understand. I have had people who have told me that I don’t look disabled. I’ve also had people who think that I have overcome it because I have had success in certain areas. What many people don’t realize is that I have strategies to help me, but that won’t cure me. People can’t see my brain and the difficulty that I have. Other individuals can’t understand why I can’t drive or read the face of a clock.
The only visible thing is a separate condition that affects how I walk. I walk with my feet turned in due to how I was positioned in the womb. People have described it as creepy looking and others have mocked how I walked. I have also had those who ask if it hurts. Physically my feet don’t hurt because of how I walk, but emotionally it hurts when people make rude comments about it. It’s harder for me to talk and answer people’s questions about this. I have found that It’s simply best to say “It’s how I walk.”
The choice of whether I disclose my disability depends on the situation. I once thought that I had to let everyone know about it and understand it. Anytime I share this information, I always run the risk of rejection. Having a disability is nothing to be ashamed of, but it is my choice with whom I share it and how much information I wish to give.
How do we engage with someone with a disability? This may in fact be the key question that either starts a new relationship or fails to do so. These rules that I have come up with are designed to make engaging with people with disabilities easier and are based on my 15 years of experience hosting a syndicated disability issues radio program.
When people hear the term disability there is always an initial series of thoughts that come to mind. Like anything, however, it will be subject to the individual, and their experience or attitude of the moment. My own perception of disability is a very large lexicon. My definition of disability is anything that impacts “normal functionality.” Though world estimates place disability numbers at between 20-22% of the population, this fails to account for conditions not yet acknowledged by the scientific and medical communities, as well as those people who will not accept they have a disability and as such will fail to report it.
As a child I remember well dealing with the falsehood that disability equals weakness and a schoolyard bully who tried to stick magnets to my
left leg to see if it was real on account of the limp I walk with.
For children who don’t fit society’s cookie-cutter mold of how the world thinks we should move, see, hear, or think, it can be easy to smell blood in the water and try to prey on anyone with subtle differences. I learned in those years my disability is my true strength. The memory of that cruelty faced in my young days led me to understand that sometimes people find reasons to exclude others
To be fair, it is easy as an adult to look back and to see how little it takes to lash out at a difference of any kind. Parents, siblings, and friends of persons with disabilities who stand beside them in hard times tend to hope children see as they grow up that their lives do matter.
The assumptions described are not limited to children or youth, however. Perhaps one of the single greatest acts of cruelty I’ve ever experienced came just after my 30th birthday when I was in a relationship with a woman who attempted to use faith to “heal” my disability without my permission.
My life and my views may be shaped by my disability, but that does not mean I’m looking to change my attitude towards my identity because our instinct in society is to see a difference in a person and feel it must be fixed. I’m proud of my radio show, my job and my life in the church. I exercise and have a great social life, not to mention my own place to live. What part of this says “He must be broken?” Perhaps that I walk a little differently or hold a weight machine with a unique grip? No. To my mind this was crossing a line. No matter how my disability impacts me it is not a reflection on whether I can find happiness.
Rule #3: Inclusion is Not an Afterthought
It is neither fair nor productive to associate with a person with disabilities out of a sense of need to bolster one’s own public image.
People with disabilities are worth getting to know. However the motivation must come from the desire to know someone for who they are. This also can be applied to employment settings as described by a recurring guest of my radio show, Sean Wiltshire of Avalon. Employment and international disability employment advocate work settings are about finding the best person for the job and with the right growth potential rather than meeting quotas. Sean’s work has carried him across the world to teach persons with disabilities their value as workers, and thereby showing them their value as part of the community.
A dear friend told me of a young woman with a disability struggling to find work and asked if I knew of anyone who could help. It was not more than 5 minutes later that I contacted someone at Avalon employment who said, “Have her get in touch with me.” She has Williams Syndrome, yet was unaware of the national agency geared toward supporting those impacted by it. This was a reminder that employers should not hesitate to hire employees with disabilities if they are qualified to do the job.
In addition to those with disabilities, their parents, siblings, and caregivers are just as worthy to have
their voices heard as those who can afford to be in the public eye. This is not to say large scale awareness campaigns don’t make an impact - they do, but it is critical to know the need for support does not stop only with people who experience disabilities themselves.
For this young woman a simple act of a friend asking “How can I help?” might have opened the door to an opportunity for a job.
Rule #4: We are our Own Best Advocates
Alate friend of mine, Dr. Marcia Rioux of Disability Rights Promotion International, traveled the world ensuring that persons with disabilities knew their legal rights and how to assert them. Those who believed in her efforts still carry the torch she lit years ago. A Canadian advocate, Ben Fulton, continues his case to change tenant laws concerning accessibility after being told by potential landlords they would not rent to him based on his vision impairment.
In the Accessible Diversity Course I designed I broke this down into three models of thought:
The Entitlement Model: a person with a disability claims more than others that they are owed compensation even if it’s not necessarily true.
The Victim Model: The idea that no matter what efforts a person takes to stand for their own rights the world shall not change
The Equality Model: this is based on the idea that a person with a disability is entitled to the same considerations that anyone else in society might expect. It allows for the recognition of the idea that accommodations are not an unfair advantage, but about leveling the playing field and creation of equal opportunity.
Rule # 5: Not Everything is Inspirational
A person with a disability may just be following
their passion for no other reason than to follow their passion, yet so many of us insist on adding qualifiers such as “Oh it’s great a person with a disability did that.”
This influx of praise, whether real or fake, loses impact past a certain point. In many disability circles it has become known as “inspiration porn.” It has the effect of seeming hollow and actually denigrating a person’s sense of self-worth and value.
In my chapter design for Disability Defined, once presented to Canterbury/ Elder College in Windsor, I present this in a slide called “It’s called breakfast” which shows the graphic of a toaster stating that when a person with a disability makes toast it is presumably not meant to inspire others - it is about making breakfast which many people with and without disabilities do every day.
Rule #6: Ask, Don’t Assume
Someone contacted me regarding a petition they started for better police training after an incident where a man was tasered during an epileptic seizure.
My contact knew that commercial media might hesitate at giving this story a fair push, but that I would not.
The petition is valid, yet I maintain that law enforcement training across disability sectors would be of use following a personal matter I faced concerning prejudice and insensitivity.
As a stroke survivor, I walk outdoors for exercise generally to no hostile response, but about two months ago on a Saturday morning, I was walking near my parents’ home and a police officer failing to recognize my condition called me over to his vehicle asking questions which led me to believe he assumed I was intoxicated (which I was not). He
asked for my identification and said I looked off on my feet.
I explained I looked the way I do because I have nerve damage. He ultimately sent me on my way with no apology or regret at all. Being a reasonably intelligent, self-aware person, I could hold my own, but it left me wondering about all those with disabilities who face a society who assumes rather than asks.
A man in a wheelchair talks to a woman who is sitting across from him. Photo by Katarzyna.Bialasiewicz.
These stories are a fraction of those I encounter, but the disability community need never feel ashamed to ask for help in explaining our conditions. We are a proud, strong community and as a united presence, mountains can be moved even if only a tiny piece at a time.
Do not live by the textbook definition of what any given disability supposedly means. Doctors and researchers like to assume they are the all-knowing authority, however the drive and will of a person can’t always be accounted for. I’ve interviewed people who have lived through conditions that by all medical logic they should not have lived through.
An example that stands out to me comes from
a conference call I was invited to attend during the pandemic when I quite annoyed a practicing physician by accounting for something she hadn’t. She claimed that no one was more susceptible to Covid than anyone else. I corrected her by saying those with weakened immune systems most certainly are. Her arrogance, I believe, came from the same place as those physicians who talk around their clients with disabilities rather than to them. I believe that assuming that because they have a physical disability they will not understand you is a fallacy at best.
If you use only your own negative experience with disability to try to guide another in their process, they will most likely adopt your viewpoint if they trust you. It follows the principle of telling somebody over and over they are useless. There comes a point they will believe it and cease trying new things. A young woman I once interviewed who worked with visually impaired children had in my opinion a brilliant idea. She had defied society’s expectations by leading these children up a mountain called Gross Grind in Vancouver. Their success, while not solely based on her belief, was no doubt strengthened by it.
I myself was told numerous times I would never graduate high school. After earning four college diplomas I can safely refute that presumption, but I had accepted what I thought until I proved myself wrong.
Possibly the greatest tragedy in disability life is the idea that those with conditions like schizophrenia may feel so fine after getting on medication that they think they no longer need it, causing an inevitable backslide.
On the air I say “it is not about an immediate cure, it is about steps in that direction.”
There is a certain vulnerability for those attempting to break the cycle of addiction or just for those with disabilities attempting to cure their pain to latch on to people they believe can “show them the way,” and to believe in the good intentions of people whose intentions may be otherwise.
That being said, however, for a person with a disability dealing with a fresh trauma, judgment can be compromised and the need to believe more pronounced.
This ties into the side issue of those with addictions and various mental health concerns and consistency. People living with addiction may say something, believing it in the moment, and then a few minutes later have a very different outlook. The young woman in question was no exception. She was told she was cured and redeemed, and therefore believed it because it came from someone she accepted as an authority on the subject.
We all want the magic placebo that will ease our pain, but in going through true healing and the realization that life with a disability doesn’t mean the end of it, people can find a boundless strength to live with dignity and to add meaningfully to the world around them.
These guidelines are a few signposts that may help someone keep a balanced perspective on disability life. We often see the world in extremes, but disability is not a curse by nature, but an experience which may propel someone to think in new ways. Like any other tool in this world, a disability can be used to build or tear down. It can be a catalyst for laughter or tears, but it rests with each of us to decide what it is and what it means.
Trigger warnings: stalking, sexual harassment, sexual assault, revenge porn, rape.
I’ve written two previous articles for this magazine about finding relationship partners through online dating. In both, I cast my experiences in largely positive terms. I still think of my experiences as mainly positive. But there was a darker side to the experiences too, which it would be a disservice to readers to minimize, especially readers who may be following my advice in lieu of getting other advice or feedback from people who know them in real life.
As a recap, I have only had three boyfriends in my life: R., whom I met when we were both in a nursing home, K., whom I met online, and my current boyfriend, A., whom I also met online. There was a ten-year gap between my relationships with R. and K., and I didn’t date at all during that time, nor had I dated in high school or college. I was still a virgin when I met K. I didn’t have a lot of romantic social experience, and for the most part, that’s been a good thing. Still, it’s gotten me into trouble.
In my first article, I wrote about not connecting with romantic prospects on social media too soon. I warned about not sending photos to men too soon and not before knowing your rights if they’re shared against your will. And even though I didn’t say this in the articles, I included those things because I made all those mistakes and suffered for them. There was the guy who I matched with on Bumble who I friended on social media because I really liked him, and because he had dated a high school friend of mine and she said I could trust him. He was angry with me because I missed answering one single text, after which he threatened to end our
relationship. I was disturbed by his possessiveness and hair-trigger temper and told him I didn’t want to see him anymore either, to which he responded by texting me from another number after I blocked his. A simple Google search will tell you that’s the first part of a stalker’s behavior—and since we were friends on social media, he knew not only where I lived but could figure out where all of my friends and family lived! I ended up having to threaten to file a police report
Then there was the guy who said we could be friends after I became involved with K. He kept trying to get me to send more photos, to the point where he was willing to pay me for them. I decided to ghost him (to abandon all contact without explanation). He got angry with me when I missed what was, in his mind, a scheduled chat (he got the date wrong), and shortly thereafter texted me to say he had shared my photos with all of his
friends and that I was fat and ugly. That’s revenge porn. There’s only one lawyer who handles this in the entire state of Illinois—I think there used to be two, but the other one stopped accepting these kinds of cases. The revenge porn lawyer cost $1,400—exactly the amount of my COVID checks from the government. At the time, my mom was very ill, and I didn’t feel right about spending that kind of money on justice for me when that money could go to something lifesaving or quality-of-life improving for her. As advised, I paid a hefty sum to copyright the photos in case they were ever placed on a porn site so they would be easier to take down. So now I am very much in the Library of Congress, and not for something I, as a writer, ever wanted to be in the Library of Congress for.
After the revenge porn happened, I was asking my friend for some help finding legal advice because he was a lawyer. He said, “You should have only sent [the photos] to people you trusted.” Blame the victim, I thought. I did trust the man I sent my photos to. Moreover, the law says that you have the right to assume confidentiality when you send any such photos to anyone, regardless of what kind of person they are.
Then there was the guy who I matched with who described himself as shy and reserved. Within minutes of matching, he was asking me about my chest size and speculating on the strength of my thighs. When I told him that I was unmatching, he proceeded to try and match with me over and over again until I blocked him. Then he found me on every other app I was on and tried matching with me on those until I blocked him there too.
There were the guys that I thought were friends, but who made passes at me in what they thought were my vulnerable moments, even though they knew I was in a relationship with K. There were the guys I reported for having questionable or outright fake profiles on apps—I came back online two years later and found those
same guys back on the same apps.
When Brett Kavanaugh was appointed to the Supreme Court, I read articles about survivors of sexual abuse. I was very confused about how they could not know that they were raped. Since this was a characteristic of many sexual abuse cases, I decided to accept this lack of knowledge on faith. I figured survivors knew what they were talking about.
I never expected that I would be one of them.
In March 2022, I was date raped by G., a person I had considered a friend for two years. G. and I met in the summer of 2020 when I was first exploring online dating. At first, G. told me he was no longer interested in finding a relationship. I had many romantic prospects at the time, but we friended each other on Facebook. He was a fan of ’80s karaoke nights and traveling. I sent him some recordings of covers I did of ’80s songs and G. commented on his beautiful travel photos from pre-COVID vacations. Things quickly progressed. Suddenly, he was typing, “Forget about those other guys. Focus on me.” I reminded him he wasn’t interested in a relationship. He replied that I was special and that maybe he had found a relationship when he wasn’t looking for one. We had some incredibly intimate video calls (our clothes stayed on; the intimacy came from waking up together, talking, and making extended eye contact). We agreed to meet, and he took work calls during, and he was over two hours late picking me up. As much as I liked G. as a person, I decided to invest my time in K. I called G. to let him know my decision. “If it doesn’t work out,” I said, “maybe we can try again.”
During the year and a half I was K.’s girlfriend, G. and I chatted platonically. From time to time, he would ask me how my relationship with K. was going, and I would tell him briefly because that was a major part of my life at the time. But I was careful not to cross lines.
He invited me to some group events and to his housewarming when he got a new apartment. K. didn’t like G., so I was reluctant to accept, and there was COVID safety to consider. When K. and I broke up, I hesitated to tell G. I didn’t think I wanted to date him again. But a month after the breakup, it was G.’s birthday. He was sad about not having anyone to share it with, and I wanted to spend some time with a friend. To be honest, I wanted to spend time with someone who found me attractive. So I asked if we could do something COVID-safe. “Come to my house,” he said. We made plans for the afternoon on March 27. We were going to hang out and watch a movie. Those were the words we used. If we had said “Netflix and chill” that would have meant something different, but we didn’t. (For the uninitiated, that means watching Netflix or having it on in the background, while mostly having sex. It was a big part of the early pandemic, at least for couples who were already established.)
The day before I was scheduled to meet him, I thought, maybe I should clarify things. He doesn’t know how recent the breakup was. Maybe he thinks this means more than it does. I pushed the thought out of the way. No pandemic experience would be complete without a little Netflix and chill. If something happens, it happens. He was cool with having sexual contact when we saw each other the first time, so I thought he might be again, and if he was, I wanted that too. I thought maybe he had changed over the past two years. So if he wanted to get physical, I didn’t mind that. If a guy had had the same attitude toward me, I would’ve been livid. But at the time, I was only thinking about things from my perspective.
He picked me up about four hours after he was supposed to. Yes, four hours. He woke up late, having worked till all hours the night before, and then he needed to clean. He offered to call me a ride to his place, but I told him I was uncomfortable using a rideshare service as a single woman riding alone.
He picked me up. Netflix happened for the opening credits and then there was the chill part, which was considerably more intense than I expected.
But I was down for it. Until he started saying stuff like, “Why are we using condoms? Aren’t you a virgin?”
“It’s not my first time.”
“It’ll be our first time.”
“Have you ever thought about birth control pills?”
“Anything hormonal is not good with my bipolar disorder.”
“Oh—” he said. I was about to tell him I have an IUD when he finished with, “Can’t we just use Plan B? Please. It [his penis] wants to feel you so bad.”
“No.” I said. What the hell? Plan B! He wants to rely on Plan B! I already told him no once, and this penis having its own desires is too weird. I was not telling him I had an IUD. He was just going to get more aggressive if he knew about that. Plan B is contraception for emergencies. You’re not supposed to rely on it. That’s why they call it Plan B. But that didn’t stop him. He kept insisting that “it would feel so much better,” and that if we only did it once without a condom, it wouldn’t be that risky. (Um, no. It only takes once to get pregnant, and he was under the impression that I could get pregnant.)
When he was saying all these things, I got scared about getting home. It was at least twenty minutes from my house to his. Even if I called my dad to pick me up, G.’s neighborhood wasn’t the safest and it was already dark. I wasn’t sure I could find a safe place to go if I had to run. Years ago, when I was still a little girl, my mother had told me what I should do if I ever found myself in a nonconsensual situation. She said, “Don’t risk internal injuries. You’ll only hurt yourself more if you fight him. Just go with it and get the hell out of there when you can.” If my mom had been alive, none of this would’ve happened, but she wasn’t.
I did what my mother had told me to do. I let him enter me. It hurt like hell. “Please stop!” I said, twice, and he said simultaneously, “It’ll get better. See, this is why we shouldn’t use condoms. It would be better for you without condoms.” He finally stopped. He made me bleed. K. had never made me bleed, especially not when I gave him my virginity.
Then G. suddenly said in an accusatory tone, “We used so many condoms [because he couldn’t stay erect]. You made me wait two years for this. You were such a tease. And I thought today was going to be your first time.”
He’d thought I would not just have sex with him, but give him my virginity on what he thought was our second date. And he was acting like I owed him sex, which was bad enough, but it was worse that he acted like I had owed him sex for two years. Were two years of conversations just to get me in bed? The misogyny! The arrogance! I didn’t say anything. I couldn’t believe what had just happened. I wanted to leave. He asked me where I wanted to eat, noting that most places were closing. I said, “We can just skip the meal.”
“What? No, we should still eat. I’m just trying to think of where.”
We ended up at a gyros place. I was still stunned. He started asking me detailed questions about my life. He term dropped Maslow’s Hierarchy of Needs[1] like I wouldn’t know what that is. And then he started talking to me about my income and how he could find me some side hustles so we could travel. He asked if my dad knew I was with him, and I said yes. He said something like our relationship was off to a good start, especially with my dad being supportive of it. Our relationship!
On the way home, he answered a call. Before answering, he said that his friend was with his niece, which I thought was an oddly specific detail.
And then his friend said, “Yeah, I’m with my niece. She gave me the stuff. If you want to pick up the
stuff, this is kind of a limited-time. . . package.” Great. They were talking about drugs.
When we were at my house, I said, “Well, thank you for dinner and . . . other things.” We laughed. And then I got the hell out of his car, cursing myself for being flirty and for thanking him, for God’s sake. How much was I at fault? How much was he?
That night, I noticed there were bruises around my nipples. They hurt. I went to bed wondering how to frame this experience. I had said to stop, and he hadn’t. He had pushed me to do things after I said no repeatedly. Had I been raped? Certainly part of the night was consensual, or he had reason to believe he had my consent. But the rest of it? If it was criminal, I knew I didn’t have a good case without DNA evidence, nor did I have the emotional or financial means to prosecute.
I spent the next day messaging my OB-GYN and googling what I should get tested for. And then I realized that I wasn’t sure if he had used a condom every time. I started freaking out. I emailed him that we were done and why and then blocked him.
I tried making an appointment to get tested, but I also tried using medical transportation. Big mistake. I am never using medical transportation from Medicaid ever again. I missed the appointment on April 5 (the soonest my doctor had) because transportation didn’t show up on time. Then it was my period (and I took a pregnancy test and googled ectopic pregnancies just so I was sure it was a real period). I didn’t start using terms like “nonconsensual” with my OB’s office until the middle of the month. So I wasn’t able to get an appointment to get tested until April 28. Then I had to wait for the test results, which was nerve-racking. They were mostly negative. I did have bacterial vaginosis, but technically that’s not an STI. But even though I tested negative for HIV, symptoms could develop within three or six months. So I had to undergo two more HIV tests after the first one. Thank God, I was negative.
I found out at a subsequent appointment that G. had been so violent that he partially dislodged my IUD.
Almost a month later, I did tell my therapist what happened. I couldn’t look at her while I did it. When I finished, I brought up the Zoom window again. She said that G. was totally at fault because I said no. She said that it wasn’t wrong that I felt sexual needs. “Would we even be having this conversation if you were a guy?” she asked. She said even if I enjoyed myself some of the time, even if I wasn’t always clear about what I was comfortable with, G. was still at fault. She said I was taking a lot of responsibility for what happened, and it wasn’t justified.
Colorful letters spell out the word “survivor.” Survivor is also spelled out in small letters on the last letter “R’ of the bigger image. Graphic by HowLettery.
My stories are unfortunately all too common. The National Organization for Women (NOW) says, “One in three women are victims of intimate partner violence and one in five women are survivors of sexual assault. . . . The disability community experiences one of the highest rates of sexual assault in America . . . [but] . . . is hardly included in conversations around sexual violence.
. . . as many as 40% of women with disabilities experience sexual assault or physical violence in their lifetimes and that more than 90% of all people with developmental disabilities will experience sexual assault.”[2] Another commonly cited statistic is this: “Between 68% and 83% of women in the US with intellectual or developmental disabilities will be sexually assaulted at some point in their lives, which is much higher than” for nondisabled
women.[3] In her book Being Seen, Elsa Sjunneson says that “83% of disabled women will be sexually assaulted in their lifetime, in some form. And we are also more likely to experience intimate partner violence.” She adds in a footnote, “Of that 83%, 40% will be victimized again. And again. And again.”[4]
Since then I’ve gotten library books about sex and disability and sex ed in general, a lot of it aimed at teens and younger women. I wanted to see what is taught now, since I had sex ed a long time ago when I wasn’t anywhere near planning to use it. I’m still working through it. It feels good: I’m reclaiming my sexual health, and I know more about communicating with a partner. And I have found A., an incredibly sweet boyfriend who knows about all my disabilities and my complete history with men and who accepts all of it.
I am not a victim, nor will I ever be. I am a survivor.
[1] Maslow’s hierarchy of needs states that a person’s most basic needs (including sex) must be met for people to realize their true potential and for people to achieve full happiness in their lives.
[2] “The Disability Community and Sexual Violence,” National Organization for Women, https://now.org/wpcontent/uploads/2018/05/Disabled-Women-SexualViolence-4.pdf. Accessed October 16, 2022.
[3] Laurie Graham, “The Intersection of Sexual Violence and Disability,” Orange County Rape Crisis Center, https:// ocrcc.org/2013/08/13/the-intersection-of-sexualviolence-and-disability/. Accessed October 16, 2022.
[4] Elsa Sjunneson, Being Seen: One Deafblind Woman’s Fight to End Ableism, (New York: Simon & Schuster, 2021), 143,144, n. 5.
Paul Timmons has played a key role in the Disability Rights Movement as an advocate for the needs and roles people with disabilities have in disaster planning. Timmons formally served in a professional capacity as the Red Cross Disability Integration Coordinator. Additionally, he is the founder of two organizations dedicated to disaster relief for people with disabilities, The Partnership for Inclusive Disaster Strategies and Portlight Strategies, which he ran until he retired after being diagnosed with cancer 5 years ago.
Many factors contribute to challenges in disaster planning for people with disabilities. Natural disasters can lead to consequences that become both the cause of peoples’ disabilities or can lead to death when people with disabilities are unable to evacuate. In August of 2023, residents of a nursing home
in Lahaina Hawaii died after the building burned down as a result of wildfires on the island. The ways in which disasters may affect people with disabilities vary depending on their conditions. Like the nursing home in Lahaina, people with physical disabilities may find it hard to evacuate when a disaster hits and people with intellectual disabilities may not understand that it’s necessary to evacuate. People with disabilities being left behind and abandoned in cases of natural disasters is another major issue, as seen during Hurricane Katrina in 2005, when dozens of nursing home residents were left to die as flood waters kept rising.
George W. Bush was president at the time Katrina hit, and many believe that the government’s response, or lack thereof, in the aftermath of Hurricane Katrina, was influenced by the fact that those living in
the area that was hit by the hurricane were predominantly black. Timmons observes that “The root of the issue with Katrina was racism and poverty. To the extent that disability overlaps in that it certainly had a profound impact on our folks. Over the last 18 years, I’m pretty confident that not enough people have talked about that.”
According to a 2023 report by Harvard University entitled “Disability in a Time of Climate Disaster,” people with disabilities are two to four times more likely to die or be injured in climate emergencies like heatwaves, hurricanes, and floods. Other challenges to people with disabilities in disasters include inaccessible transportation and emergency shelters, as well as social isolation. Hurricane Katrina was no exception, with the devastation wrought by the storm disproportionately impacting people with disabilities. An accurate statistic of the number of people with disabilities who died during Katrina has never been verified, yet it is known that 73% of the deaths in the New Orleans area that resulted from the hurricane were among those aged 60 and over.
during a disaster comes with many added complications. One example during Hurricane Katrina was inaccessible buses. Ethel Freeman, a 91-year old woman, died slumped over in her wheelchair at the convention center in New Orleans where residents attempted to take refuge after the storm. Freeman was unable to leave the convention center due to an inability to evacuate because of a lack of accessible buses. Challenges for people people with disabilities, such as a lack of money and inaccessible transportation, can greatly hinder the ability to evacuate during a disaster.
Timmons doesn’t mince words when he talks about the progress, or lack thereof, that has been made for disaster relief for people with disabilities since Hurricane Katrina. He is critical of the amount of funds spent by the Red Cross on disaster efforts for people with disabilities. “The Red Cross spends far more on pets and animals than they spend on people with disabilities,” he says. Still, Timmons is willing to admit that some progress has been made in the area of disaster relief efforts for people with disabilities since Katrina. “We moved the needle a little bit,” he says.
For people with disabilities, evacuating
If Hurricane Katrina happened today, would the response be as bad as it was in
2005? “Depends on where it hits,” Timmons explains. ”Louisiana has learned some lessons - things are a little bit better there. “I live on the coast of South Carolina. I have evacuated. Let me tell you, it’s very expensive and very time-consuming. Katrina is a wonderful example. Katrina hit at the end of the month when poor people don’t have any money.” Food
These days, Timmons says efforts have shifted from focusing on disaster relief to food relief for people with disabilities, which is an issue he doesn’t believe has been talked about enough. “The past three years I’ve worked with her (his wife, Kelly) on food justice stuff, and being a ...crotchety, old observer of the movement.”
Timmons’ deep passion for food justice was inspired by the formation of an initiative by his wife Kelly called Kelly’s Kitchen, which exists with the purpose of “...promoting healthy nutrition in the whole community, with a focus on providing education on ways to access healthy food, explore employment possibilities in the food and beverage industry for people with disabilities, ensure food security, and learn healthy preparation techniques.” Timmons explains that “the goal of an advocate should be to work
themselves out of a job, and food offers another opportunity to do that.” With food often needed in the aftermath of disasters, people with disabilities having access to food after a disaster is critical.
Food insecurity, like disaster relief, is a major challenge faced by people with disabilities. According to the U.S. Department of Agriculture, studies show that half of foodinsecure households with disabled adults experience deep food insecurity compared to one-third of all food-insecure households.
Timmons acknowledges the intersection between the work he has done in the past around disaster relief for people with disabilities and the work he is currently focusing on now around food justice issues in the disability community. “We’ve done a little bit of food work in the aftermath of disasters which has always been very fulfilling, so it’s allowed the circles to overlap.”
Whether he’s advocating or creating solutions for better disaster relief efforts for people with disabilities, or working to assist people with disabilities in gaining access to healthy food, Timmons’ impact has helped people with disabilities have a voice at the table pertaining to issues such as food insecurity and disaster relief, which both seem to disproportionately impact the disability community.
GUILT is a feeling that many of those living with a chronic illness or disability feel on a daily basis.
It can be something that weighs heavily on us because of what we’ve had to let go, what we dream of doing, simple tasks we cannot do, what we see others achieving and so much more.
Not only do we feel guilt towards ourselves, but especially for those that have supported us on our journey. We feel we owe them everything, but we can’t give them what they truly deserve. Instead, we feel strong feelings of guilt for making them suffer too.
Although it’s out of our control and a result of our illness or disability, we are quick to blame ourselves and feel they would be better without us.
This is something I’m personally working on with my counselor to help me find acceptance.
A lot of my guilt is aimed at:
1 Not giving my husband the chance to become a father
2 Not giving my parents another grandchild
3 Not working and my husband having the responsibility and pressure to bring in an income so we can survive
4 Not having the energy or finances to travel the
5 Not having the energy or being well enough to enjoy quality time together
6 My husband being on his own while I sleep all day or having to look after me when he’s not well
7 Not having the energy or being well enough to walk the dogs
8 Not being able to travel far when I have people supporting me in different locations or needing my husband to drive me places.
9 Not being able to drive forty minutes just to see my friend for a few hours
10 Having others run my projects if I’m too unwell
11Canceling on plans, missing important gatherings, leaving early or zoning out
12 Financial loss for canceling plans (like if we buy tickets to an event ahead of time and I cannot go.)
13 Having a good health day the day after I canceled something
14 Taking my frustration out on those around me
15 Burdening others with my feelings if I’m down
16 Not being able to support others mentally as much as I would like to
17 Not having the money or energy to make my home perfect
18 Not being able to complete everyday tasks like the washing up or shopping
19 My parents having to help me shop, do errands for me and even care for me at times (my dad has helped me a huge amount with our home improvements as I stopped bringing in money to cover a repair person and I haven’t been able to help)
And so much more.
Dependending on personal circumstances, this will be different for each person, just like the effects of our conditions can vary.
A huge amount of guilt came on our wedding day (14th April 2018) and it took over two years to forgive myself. I was due to have my third major bowel procedure as a result of bowel obstructions, but my surgeons held it off so we could have our wedding because I was marrying the love of my life. I was truly grateful that we got to have our special day after wondering if I would even make it through the year prior. I had kept myself busy in the hospital finalizing some of the plans for the wedding and even had to sign our contracts for the purchase of our new home in my hospital bed.
The day was perfect, with lots of laughter, but the worst bowel obstruction I had for a while decided to hit on the day of my wedding. My mind started
questioning if I had eaten anything wrong, but I had been careful about what I was eating. I took meds and pushed through hoping it would ease. but I almost threw up on Dale (my husband) during some photos. I headed back to the hotel room, curled up in pain and cried. It was time for our first dance and to cut the cake, and I just kept on thinking about how much money we had spent on the day, that I hadn’t spoken to everyone yet, that our evening guests had just arrived, how everyone was there for us and how much was still left to celebrate and enjoy.
I was late going down to the reception but I pushed through to cut the cake and have our first dances. I was swirling around hiding the pain I was in so we could have our special moments, but as soon as they were over, I felt this hot flush take over my body. I made it to the hotel room, but the pain took over my whole body, and I couldn’t move for the rest of the night. It was only 8:30pm but instead of celebrating with my husband and guests, I was in bed crying myself to sleep in my wedding dress.
For years I kept on beating myself up about becoming unwell. I had missed so much like the bouncy castle, bucking bronco, the musician, lighting the sparklers and dancing into the night. I felt guilt for myself after working so hard towards it and me knowing we wouldn’t get this moment again. I felt guilty for not speaking to everyone who attended as I was planning to do later on in the night when things were more relaxed. I even looked at ways we could recreate the party with everyone that was there but it just never happened as life took over.
When I first became unwell, I even felt guilty when my parents would rush me to hospital in the early hours and my
mom would stay with me until I was in a ward. She would insist on visiting me everyday even though she was fighting cancer, and I felt guilty for this because she should have been resting. My husband also suffered mentally when I was in hospital, and he still struggles today as a result of this trauma.
Although I had to be in hospital and I was fighting for my life, I felt guilty as it was my body creating this stress for everyone.
One thing that’s difficult to manage is finding the right balance as someone with a chronic illness when there’s a good health day. We want to enjoy it, but we have to think about the consequences. What impact will this have on us after? It’s a constant battle and the balance is never right.
For those who do manage to work, many have to make sacrifices in their personal life due to the impact working has on their health. You have to work out whether it’s the right thing to do, or if you will even be able to manage it. Then our guilt plays on our mind again when we question this, telling us that we’re not bringing in as much income as we could or working enough, or that we are letting our employees down when we have to ring in sick or leave early or start later.
The feeling of guilt can over power us on a daily basis.
It’s easy to compare our lives to what they once were or what we dreamt for them to be.
Social media also makes it easy to compare our lives to others and feel a form of jealousy when they are doing stuff you wish you could do. Even seeing other people with health conditions living their lives without as many restrictions can make you wonder “Why me?! Why was my outcome different?”
Don’t get me wrong, of course we feel happiness for others being able to do these things, and I personally am overjoyed to see people with stomas living a ‘normal’ life.
It just hurts when it can’t be you.
Guilt is a negative emotion we feel because something we’ve done or can’t do goes against our core values and beliefs. These form in our early childhood to help us understand ourselves, others and the world.
They then impact how we react, our decisions and actions in certain circumstances and situations.
The 3 forms of guilt:
Natural Guilt - Remorse over something you did or failed to do.
Toxic Guilt - Guilt leading you to view yourself as a bad person
Existential Guilt - This links to “Why me?” A feeling of injustice either towards you or happening in the world.
For me, I feel all three forms of guilt and that is what makes it hard to stop feeling guilty. I’m fighting against all three and I know most people with a chronic illness or disability might be too.
The feeling of guilt is extremely damaging on our mental health and this can even impact our physical health further. That’s why it’s vital we try to restrict this feeling as much as possible. We will either have to focus on making amends, work through the guilt, or simply let go. It’s a hard journey and it will take longer to achieve for some than others. Today I’m still wondering if I will ever achieve this, but I’m trying.