Goodbye? How to Talk About Disability Well

What is disability?

First, let's talk about what's important for people who are among us (in political life, at work, in thousands of schools, really everywhere!) but are so rarely allowed to speak. It's worth looking at disability in the social model, which is represented by one of the most up-to-date, but also simply the best definitions, found in the UN Convention:

"disability is an evolving concept and (...) results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others."

This social model of perceiving disability sets out several extremely important principles for how to talk about it and how to perceive it in general. They should also apply to how we behave and what language we use in communication (remember that how we talk about the world strongly shapes how it is perceived). We develop them below in our glossary to help you, the readers, better understand the needs of people with disabilities, improve their quality of life, and support your mutual interactions. These are:

• the principle of dignity and respect for freedom and independence,
• non-discrimination,
• participation in social life on equal terms,
• respect for diversity,
• equal opportunities,
• availability,
• gender equality,
• equal rights.

What to remember – the most important rules

You may be familiar with this dilemma: “disabled person” or “with a disability”? You don’t want to offend anyone, but it also so happens that no one has ever shown you the linguistic path (well, what are we for?). Regardless of the type or degree of disability, we are bound by certain general principles necessary for the proper functioning of social communication – and they apply to absolutely all of us. Here are the most important ones:

• Remember that it is the person, not their disability, that is most important , so always say: a person with a movement/vision/hearing/intellectual disability/autism spectrum/on crutches/in a wheelchair. They emphasize the primacy of the person – disability should never take away subjectivity or dictate how someone moves in the social sphere of life.
• The term "disabled person" is harmful because it defines a person solely in terms of one aspect of their identity, while absolutely everyone has the right to be recognized for other components of human existence.
• Language is constantly changing , so it is important to observe these changes and react to words that have fallen out of use due to their harmful nature. Terms like "invalid", "blind", "cripple" or "handicapped" are offensive - do not use them and participate in activities aimed at increasing social awareness of their harmfulness.
• Be respectful and open – communication is key, so whenever you are unsure how to behave towards someone, just ask!
• Never offer help without first asking if someone needs it. Instead, ask how and if you can help – touching or pushing a wheelchair without express consent is simply not okay.
• Always address the person you are talking to directly , not their caregiver or accompanying family member, as such communication very often undermines their subjectivity and autonomy.
• Respect the right to privacy . Direct questions about a disability are tactless, and talking about it may come naturally, of someone's own free will, so don't be pushy. Sometimes people with visible disabilities try to hide them because they don't want to attract attention or be seen through their prism.
• Don't pity - if help is needed, you will most likely be asked for it. Don't pity someone's fate, because showing compassion often causes a sense of humiliation, shame, and dependence on others.
• Don't take away your decision-making power . Limiting your sense of agency in making decisions about yourself makes it harder to express your own needs and take care of them.

Types of disabilities

It may be useful to understand people with disabilities to know the types of disabilities they struggle with on a daily basis. Let's take a closer look at them:

Congenital – occurs as a result of prenatal defects or perinatal trauma. Its causes can be divided into internal (developmental defects, damage to the nervous/endocrine system, genetic defects, diseases causing systemic infection) and external (trauma).

Acquired – occurs as a result of damage to some structure or system in the body due to the action of internal factors (disease process, poisoning) or external factors (trauma, road accident, etc.).

Multiple – is multiple, meaning it is a combination of at least two different disabilities. It may involve, for example, combining movement with vision, hearing or intellectual.

Sight

It is related to the organ of vision, it is a type of sensory disability and includes dysfunctions that affect the reception of visual stimuli. These include glaucoma and retinopathy. We are also talking about visually impaired and blind people.

What to remember when contacting a visually impaired person

These are people who:

• have lost their sight in early childhood or have been blind since birth,
• have partially lost their sight,
• are visually impaired,
• they move with a guide dog, assistant or white cane.

If you are offering your help to a person with a visual impairment, let them grab your arm or hand. When leading them, inform them about all obstacles, describe what you will be doing and what obstacles you have in front of you. When you see such a person with a guide dog, never approach the dog (and certainly not without permission!). And don't be afraid of forms such as "goodbye" or "see you later" - you can safely use them in conversation.

Hearing

It is related to the hearing organ. It is a type of sensory disability. Depending on the degree of hearing loss, one can distinguish between deaf and hard of hearing people.

What to remember when contacting a person with hearing impairment

These are people who:

• were born deaf,
• have lost their hearing,
• are hard of hearing.

Never use the term "deaf and dumb". It is offensive and may suggest that Deaf people do not speak the language, even though they are required to use Polish Sign Language. The spelling is important here - when it comes to deaf people : the spelling with a capital letter refers to the minority of the Deaf community, who have their own language and culture, while the spelling with a lower case letter refers to a deaf person. The spelling "deaf" is a combination of these two words into one - and this is recommended.

You can communicate with such people by writing something on a piece of paper or on the phone, but remember that the primary language of a deaf person is sign language, which is different from Polish, so always use simple words in communication. Deaf people can also lip-read words - try to speak clearly, without covering your mouth, and address such a person directly, and never to a PJM assistant/interpreter.

Movement

It is related to the musculoskeletal system – it is associated with limited efficiency of the lower, upper and/or trunk limbs. It appears as a result of diseases, damage to bone, muscle, nervous structures or brain damage.

What to remember when contacting a person with a movement disorder

These are people who:

• they move around with the help of a wheelchair,
• have hand/arm motor dysfunction,
• they use crutches,
• are amputees,
• are short-statured.

If you are talking to someone in a wheelchair and you have the opportunity, sit in a chair. Always ask how you can help them and never force them into a wheelchair without asking or touching them without the owner's permission.

Intellectual

This disorder involves a decrease in the overall level of intellectual functioning of a person and a resulting decrease in the ability to adaptive behavior. Its basis may be genetic, perinatal, or acquired, e.g. as a result of an accident.

What to remember when contacting a person with an intellectual disability:

These are people who:

• have a moderate or significant degree of disability (these are two of the three degrees of disability – the first one is mild),
• experience difficulties with speaking, interpersonal relations, social competences,
• they also often struggle with sensory or motor disabilities,
• They use speech at different levels; their motor coordination and skills are also different.

In communication, use simple language, do not use metaphors, borrowings or dialects. Remember to always address a person according to their age and avoid diminutives - infantilization is unfortunately a common phenomenon.

Speak well to me (and to me)

We hope that now it will be a little easier for you. Remember that although these rules are intended to be universal and apply to every person with a disability, the best guide in communication should still be... your language. Love, go crazy and ASK what's next.

Also read our other texts as part of the Sekson x Your KAYA collaboration:

About the Accessibility Map and the adaptation of medical services to OzN

Myths and stereotypes about the sexuality of people with disabilities