iv. Accessibility+Inclusivity
Disability – A Little Glossary
During our work with queer and crip perspectives in the museums we have witnessed that “queer” as a word seems to be more familiar to many than the word “crip”. This depicts the current situation also more broadly as disability as a phenomenon is still largely unknown and a silenced issue. So we thought it might be useful to discuss disability a little more before continuing to accessibility and inclusivity. We did this in a form of a glossary to support information retrieval for further (un)learning.
Disability History:
The history of disability is as diverse as any, but it might be useful to think about a couple of things that are related to this history. This is now done mainly in the Global North and Finnish context. This is an important point as there is no one history of disability and the contexts of disability vary in relation to location, culture, time and so forth. There is a very scarce amount of written history about disability, especially the kind that would have been told from the perspective of the people with disabilities. The majority of this written history has been written in the context of medical science and health care.
Disability has been often and long been defined and existed in relation to the ideals of human that have as well varied from being “god-like”, “normal” or “productive”. In this sense disability has always been regarded as “the other”.
This otherness has resulted in systematic and intrusive discrimination and oppression that still continues today — including reduced and harmful stereotypes that shape and affect our understandings of what it means to be mad, sick or crip still in this moment in time, and that have contributed to stealing agency from the individuals with disabilities and to the pervasive ableism of our current societies. One of the most cross-cutting coincidence of this oppression and discrimination is the isolation that people with disabilities and chronic illnesses have lived and still live with in various forms and for various reasons.
These all have contributed to the silence that surrounds disability. This becomes quite evident in a fact the UN treaty for human rights of people with mental disabilities was ratified in Finland in as late as 2016. Accessibility and inclusivity then are also strategies to tie the gap induced by the silence and isolation.
To be absolutely clear: despite the oppressive history, people with disabilities and chronic illnesses have not remained silent and have lived amazing and beautiful lives.
Disability Rights Movement:
Along with the civil rights movement of the 60’s and 70’s came disability activism that called for equal opportunities and rights for the people with disability.
Disability Studies:
As a generative byproduct of Disability Rights Movement became disability studies, which is an interdisciplinary field of research that studies disability and the phenomena related to it without medical perspective. This field of study seeks actively to better the conditions of people with disabilities. Differing from the texts produced in the context of medical science, disability studies is often done by people with disabilities.
Alternative and Parallel Fields of Research:
Mad Studies (studies the lived experiences, history, cultures, and politics about people who may identify as mad, mentally ill or neurodiverse), Deaf Studies (studies the lived experiences, history, cultures, and politics about people who may identify as deaf), Crip Theory (seeks to combine personal, cultural and political spheres of disability).
Cultural Models of Disability:
Moral Model (disability is located in a sin and can only be addressed or treated with religion), Medical Model (disability is located in the individual and can only be treated and addressed in medical terms), Social Model (disability is located in the society, infrastructure and environment, fails to take into account the actual body with disability), Affirmative Model (promotes positive identities associated with disability, fails to take into account the multitude of emotions the disability entails), Cultural Model of Disability (disability is cultural and people with disability should be regarded as a cultural minority).
Disability Justice:
A more recent movement and a framework initiated by trans and queer people of color that is intersectional and acknowledges that fact that ableism enables other forms of oppression. Re-examines established (white) notions of disabilities, human rights and social justice movements.
Crip:
Crip is a short for an English word ‘cripple’. The term was formerly used as a pejorative for people with disabilities or sickness. Along with the disability activism of the 60’s and 70’s the term was re-owned and repurposed by the people with disabilities and used in a provocative and even ironic manner. The contemporary use of the term bases on inclusivity and intersectionality. Meaning that it includes all disabilities varying from physical impairments to chronic illnesses and regards intersecting identities. In other words the term has been appropriated to reinforce positive meanings related to disability and self-determination plays a huge role in it. The origin and use of the term can slightly be compared to the similar development in the use of the term queer. There is no Finnish translation for the term.
Ableism:
Systemic political, institutional, or societal structure, attitude or action (discrimination) which regards disability and illness as something undesirable, wrong and “other.” Internalized ableism takes place when a person with disability or illness internalizes these ideas and starts to regard themselves in this way. The mechanism is similar to other forms of oppressions such as racism, cis-heterosexism, classism and so forth.
Words and Meanings
Now we can move towards accessibility and inclusivity as these words are strongly linked to disability. We also encourage to a broad understanding of these terms as they are applicable in other fields of intersectional feminism as well.
Here we have selected dictionary definitions of these words at hand:
What is accessibility?
“The quality of being reached or entered.”
“The quality of being easy to obtain or use.”
“The quality of being easily understood or appreciated.”
“The quality of being easily reached, entered, or used by people who have a disability.”
What is inclusivity?
“The practice or policy of including people who might otherwise be excluded or marginalized, such as those who have physical or mental disabilities and members of minority groups.”
According to these definitions there is someone or something already established that or who is granting the access or including in people in an already existing structure.
To include in or give access to what?
There is a misperception or misunderstanding these words and their meanings. Or more precisely in our opinion they demand more detailed defining.
These misperceptions or misunderstandings often lead to for example tokenism, commodification or other forms of false diversity.
These also lead to situations where the thing that we are making accessible is always regarded as something to be worth accessing in the first place. And this is something we cannot fully know if it hasn’t been accessed by some groups of people that have not had the possibility to affect it.
Think about it like an Online Document.
When you share a document you can decide who you give access to and on what levels. It usually works in according to this hierarchy:
→ view → comment → edit
This is not accessibility or inclusivity. Accessibility and inclusivity require this to be reversed.
There is no “you” creating the document or deciding who gets access and on what levels. Everybody should be able to edit, so that it is even possible to comment or view.
→ edit → view+comment
Accessibility and inclusivity should always entail in themselves the possibility to edit, to dismantle and actually change things. And this requires accommodation.
Here we had a go on defining these words and their meanings again:
“New” accessibility?
”The quality of being reached or entered.”
+ the quality of being worth reaching or entering and being able to change to accommodate and to dismantle.
”The quality of being easy to obtain or use.”
+ the quality of being worth obtaining or using and being able to change to accommodate and to dismantle.
”The quality of being easily understood or appreciated.”
+ the quality of being worth understanding or appreciating and being able to change to accommodate and to dismantle.
”The quality of being easily reached, entered, or used by people who have a disability.”
+ the quality of being worth reaching, entering, or using by people with disability and being able to be changed by and to accommodate people with disabilities and to dismantle ableism.
“New” inclusivity?
”The practice or policy of including people who might otherwise be excluded or marginalized, such as those who have physical or mental disabilities and members of minority groups.”
+The practice or policy of building, establishing or initiating something by or with people who might otherwise be excluded or marginalized, such as those who have physical or mental disabilities and members of minority groups, for them and everyone else.
What would be your definitions?
Words and Practice
What does this mean in practice?
Granting access to a space that has not been affected and shaped by accessibility and its consequences, itself requires accountability.
When organizing a gathering or an event:
- Please add accessibility and inclusivity planning to your project schedule.
- Please write out your values and aims of your operation. This allows for transparency.
- Please ask what people need and wish for. Not only from the audience, but from the contributors as well.
- Please listen to their wishes and needs, terms and conditions. Think about your own wishes and needs, terms and conditions as well.
- Please reserve time and resources for making the required changes. Think about this while applying for funding.
- Please create spaces that are physically accessible and can be modified during the event or gathering.
- Everything is not possible, but what is possible is to create space for negotiation.
- This is not enough, but this is we we can start.
Concrete examples: Safer spaces guidelines, accessibility checklists and guidelines, access riders, feedback forms, diverse ways of participation, recruitment policies, gender neutral bathrooms and other facilities.
The words, meanings and practices discussed above are not fixed. There are multiple other definitions, understandings and uses that are vital in different contexts, and they change constantly. Accountability and accommodation are also huge words that would deserve their own full presentations.
Regardless of all the work and changes, spaces and situations might not be accessible for everyone due to e.g. contradicting access needs or chronic pain. This is not pessimistic, but a strategy for thinking about accessibility and inclusivity. In accessible or inclusive event production and in all action we should aim at developing, planning and implementing structures that allow us to acknowledge and continue making space for people who will never attend or be there, not only in the physical sphere, but in our daily thinking. This means that we refuse to justify inaccessibility by thinking or stating that “They would not have come anyway”.
This might be helpful in making space within our thinking and in an attempt to change accessibility and inclusivity from being mere stacks of knowledge, add-ons in operation or gestures towards equality into being continuous processes, attitudes, methods, strategies and lived realities.