Olya Mangusheva’s road to
occupational therapy started with a
volunteer assignment with an
organization called Mission to
Ukraine based out of Carmel, IN.
She worked as a translator for U.S.
therapists who went on service trips
to Ukraine. Olya started the first
augmentative communication
program in the country in her work
with Mission to Ukraine thanks to the
guidance and help of visiting
professionals from Easter Seals
Crossroads in Indianapolis, IN. A
group of visiting OTs with Mission to Ukraine observed Olya working with children on fine motor development to help them physically access their AAC devices, and suggested she would make a great occupational therapist. Olya took the recommendation to heart and attended University of Indianapolis for her Masters in OT. After graduating, Olya returned to Ukraine where she was the first and only licensed occupational therapists practicing there until recently, as the country just recently acquired their second licensed OT. Due to her work, in collaboration with occupational therapists from three countries, Ukraine Society of Ergotherapists is now an associate member of the WFOT Organization. OTs for Action is honored to have Olya contribute as a guest author to share her experiences with occupational injustice in Ukraine and offer a call to action.

I come from a country where disability continues to have significant social stigma. The kind of stigma that makes mothers hide their children, at best in the comfort of their own home and at worst – hidden in orphanages. I have worked with those children and seen time and again how occupational injustice mercilessly robs them of joy, the joy of doing, sharing, communicating, and being. So what is occupational justice to me? I understand it as violation of the individual’s right to

do what he or she wants in life based on personal distinctive characteristics: ability, looks, social status, ethnicity, etc. The orphanages I’ve worked in are the epitome of occupational injustice where children are tied to their beds, offered little to no sensory stimulation, let alone opportunity to play or explore. This kind of injustice is graphic, nauseating, shocking, and disturbing. But who sees the hidden ‘unfits’? Does the public know what goes on behind the orphanage walls?

At the core of any injustice there is pride, fear, ignorance, selfishness, and lack of compassion. And I believe that any effort for justice must address those very core qualities and behaviors. Hearts need to change. Policies to protect the rights of at-risk populations must be enforced. Economies must budget affordable and professional services. Support networks must embrace the individuals experiencing occupational injustice. Community places must be disability-friendly. Sounds like a utopia, doesn’t it? But who says we must settle for less?

A mother of a child with disability comes to mind. Despite ‘inclusive education’ policy adopted in Ukraine, her son was denied the right to attend public kindergarten based on his cognitive and physical abilities. This happens to many of my clients. Children’s primary occupation is play, preferably social play, and preparation for school or engagement in learning activities. This boy was being denied a chance to participate in activities that not only bring joy and meaning to his life, but also shape his future. Most moms stare this occupational injustice in the face and feel helpless. This mom was fearless and fought till she not only achieved her goal of kindergarten admission, but also a provision of an assistant for her son with special needs.

This story isn’t unique, albeit so powerful. This mother knew she had a voice, and she persisted till it was heard. How do we fight occupational injustice in our communities? As occupational therapists, we have a variety of tools to address this issue. We empower our clients to find meaningful occupations and equip them with the skills required. But must think broader as occupational injustice is the climate our clients live and work in. It is the temperature of attitudes, terrain of accessibility and disability-friendliness, and precipitations of opportunities available to those we support. We must educate our communities to eliminate social stigma and nurture acceptance and compassion. We must enable those who have a voice to make it louder and be the voice for those who are hidden. Wouldn’t it make sense to start at the very beginning: our children’s first interactions with those who are different from us?

In reality, our ‘day jobs’ as occupational therapists rarely allow for much advocacy and social integration opportunities, let alone policy making and systems changes. However, without these changes the seeds we plant daily may not take root because of the climate. So, let us work together to find solutions and grow as professionals and human beings. I look forward to seeing what the future has in store for OTs For Action.

Olya Mangusheva, Occupational Therapist

Zhitomir, Ukraine

https://www.missiontoukraine.org

Interested in providing support as occupational therapy emerges in Ukraine?

Ukraine needs the support of occupational therapy professionals in other countries to lecture, provide curriculum, mentor students, and provide clinical training. Interested individuals please contact Natalie Zaraska: natalie.rehab365 @gmail.com who has been working with WFOT to develop OT in Ukraine.

People are empowered by engaging occupations. In any setting we practice, or with any individual or group we serve, we are all working to help people, organizations, and populations through empowerment and capacity building. By nature, it is easier to serve people and organizations, but how can we as OTs better serve populations? How can we reach our most marginalized populations?

There have been many ‘hot topics’ in regards to social justice issues lately. Because we at OTsforAction have set out to help everyone, not just our OT colleagues, understand occupational justice and how injustices impact both identity development and wellbeing of those around us, we’re going to take a look at some mainstream images of individuals and apply it to an occupational justice framework and how it addresses larger populations.

I want to highlight the work of a Brazilian artist, whose images have recently been heavily circulated on social media. She’s been highlighted as a #differencemaker, identifies as a #feminist, and has been a featured artist in the 2015 TEDWomen exhibit. Carol Rossetti, illustrator and designer, is behind the raved Women (Mulheres) project and produces zines with a feminist artist group in Brazil called ZiNas.1 Rossetti’s work highlights various injustices experienced by women by pairing her illustrations with words of empowerment. Here’s how her art changes the dialogue from occupational injustice to one of occupational justice…

Sarah

“Sarah is a transwoman, and was recently disrespected and made to feel ashamed by two cis-women in a female public toilet.”

There are some basic human rights and assumptions relevant here…

1) Using the restroom is a necessary daily occupation. We all need to do it in some capacity.

2) As with all members of society, her needs should be honored and she deserves to feel like an accepted and supported member of society.

3) Sarah deserves not to be forced, pressured, or coerced into refraining from this necessary occupation because of lack of access to appropriate public toilets. All people should have equitable access, regardless of personal differences.

Paying homage to our occupational justice framework, there are some structural factors at play here...

1) Individuals beliefs and values are shaped by a variety of cultural, societal, religious, etc. influences.
2) We select individuals, along with their beliefs and values to represent us, who have influence on policies.

3) National, regional, and local policies put in place impact access for persons like Sarah (such as those “bathroom bills” introduced in that would “restrict access to sex-segregated facilities on the basis of a definition of sex or gender consistent with sex assigned at birth (biological sex).”1

4) Cultural and individual beliefs and values affecting reaction to such policies.

If we do not break the cycle of devaluing people’s basic human rights, people like Sarah and the entire transgender population will continue to experience occupational marginalization (lacking the power needed to exert choices and decision making and participations in occupations is hindered) and occupational alienation, if people feel like they have to refraining from certain public areas due to scrutiny of using the restroom in public. We know that these negative experiences over time ultimately lead to negative consequences on health and wellbeing.3

All of these factors are intertwined to create a complicated web between people and the structures put in place around them. Occupational injustices like those faced by Sarah cannot be resolved at an individual level, but people can compel systems to change. By providing opportunities for individuals to choose, universal access to environments without bias, and by working to improve societal and individual understanding of how Sarah’s situation is a matter of occupational injustice, we can facilitate conditions that lead to occupational justice and change the outcome for Sarah and others in her situation.

Now let’s take a look at another one of Rosetti’s Mulheres…

Kelly

“Kelly has Down Syndrome, and many people are surprised by her independence and autonomy.”

Some of her basic human rights from an occupational justice lens:

1) To be supported to participate in occupation as an included and valued member of their family, community, and society;

2) To be valued for her participation and contributions;

3) To have choice to engage independently to the maximum extent possible in occupations that contribute to her positive health and wellbeing

4) To have access to occupations, regardless of her personal differences, that enable her to flourish, fulfill her potential, and experience satisfaction;

and 5) Not to be excluded from occupation by economic, social, and physical barriers.

There are many policies and laws that pertain to rights of people with disabilities such the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). Engagement in occupations for persons with disabilities can be impacted by structural factors such as:

a) access to community supports, social networks, and health resources available to people with special needs;

b) the quality of education for students with disabilities;

c) employment opportunities available, both in regards to resources and company values; and

d) the cultural, societal, and individual values that affect perception of the capabilities of people with disabilities.

Kelly, as portrayed in this example, has experienced positive outcomes of occupational justice. She has had structures in place that have allowed her to live by herself and engage in meaningful occupations such dancing, writing, continuing her education, and socializing with peers. She derives meaning from the experiences that contribute to positive feelings of autonomy. Still, with implicit biases as a society, Kelly encounters those who may see her has he helpless or incapable and leave her marginalized (without choices) or imbalance (under-occupied).3

Similarly, individuals’ perception of a group of people at large has impacted Bruna Krenak and her ability to demonstrate a certain level of self-sovereignty. Our last Mulheres…

Bruna Krenak

“Bruna Krenak has been told that she shouldn’t be considered indigenous anymore because she wears jeans and goes to college.”

Let’s recap some of the basic human rights from an occupational justice lens:

1) Everyone has the right to develop themselves through participation in a variety of meaningful occupations, such as education in Bruna’s instance.

2) Everyone right to exert autonomy through choice in occupations, which should not be restricted. Each individual’s life circumstance and occupational needs are different. These differences should be respected and people should not make assumptions about others based on factors such as age, gender, socioeconomic status, religion, ethnicity, etc.

3) Engaging in one meaningful occupation does not need to devalue or feel contradicted for engaging in another valued occupation. Bruna Krenak should not feel as though her desire for higher learning or clothing choices need to devalue the meaning she derives from cultural beliefs and related occupations or that she should be restricted from exploring other valued activities and occupations based solely on her native origin.

Structural factors can support access to or obstruct an individual’s basic human rights. In Bruna Krenak’s situation, there are many biases both systemically and on the individual level that could lead to occupational deprivation (preclusion based on factors outside control of the individual) and lack of autonomy or marginalization.

Just as in Sarah’s and Kelly’s case, we can change the narrative by providing opportunities for individual choice in occupations and identity development. We can work to improve societal and individual attitudes and advocate for policies that allow people like Bruna Krenak equitable access to a various occupations. We can choose politicians who understand the need for occupational justice, in order to best inform policies for those most directly impacted by them. It is our duty as occupational therapists to respond to occupational injustices.

Thank you, Carol Rossetti, for using art to helping spread the message of empowerment, basic human rights, and occupational justice for these Mulheres.

Brittany Behrendt, Occupational Therapist

Seattle, WA

Citations:

An Insider Perspective: Occupational Injustice in Ukraine

Mulheres by Carol Rossetti Through an Occupational Justice Lens