Nisidotam: Defining Disability

Understanding disability is an evolving process, changing as the day to day lives of people and communities change or as access and quality of treatments or supports change. In the following section, read more for a full definition of disability as well as examples of barriers and facilitators shared by people from the communities.

Nisidotam is an Algonquin word that means I understand. To understand what it means to live with a disability is an important step in the path toward inclusion. To reach this understanding, we must take the time to stop and listen, listen to people living with a disability, listen to their families, to support workers and employers, to learn from each other. 

 Through understanding, we will grow towards positive change. We need to remember that understanding is a path that continues. As we find answers, we will encounter new questions, that will challenge us while leading us to a deeper understanding. 

 Nisidotam, I understand is something I can say trusting that my understanding will continue to guide me towards the other with whom I will grow towards a greater inclusion. 

 Nisidotam: Building understanding of disability in the communities together    

  Living in a situation of disability has two defining features:

Part 1 : Having a condition of difference which may or may not cause suffering;

Part 2 : Facing barriers to what would be considered normal access.

  Part 1. A condition of difference

A person living in a situation of disability has at least one difference in one or more aspects of their mind, body, and/or emotions.  Differences can be minor or significant and some people may have more than one. 

A condition of difference:

  • may be present at birth or develop over time;
  • may have been caused by an accident or trauma;
  • can affect and shape a person’s mind, movements, senses, or participation in activities;
  • can result in internal suffering, such as feeling pain;
  • can add to or enrich the lives of the people who experience them.

Examples of the 6 main categories of conditions of difference

An icon for Developmental Disabilities is a brain.  Words go around the frame to that describe areas of development that are implicated by developmental disability, these are: Language, Life Skills and Sensory.  A speech bubble gives examples of some types of developmental disabilities: Autism Spectrum, Fetal Alcohol Spectrum, Down Syndrome.
An icon for Learning Disabilities which is a person sitting at a desk with letters and question marks in a thought bubble.  Words go around the frame to describe areas of development that are implicated by learning disabilities: Organize, Remember, Understand   A speech bubble comes out from the icon with some types of learning disabilities. For Example: Dyslexia, ADHD, Executive Function
An icon for sensory disabilities is an eye with a line through it and an ear with a line through it.  Words to go around the frame to describe some impacts of sensory conditions: Vision, Hearing, Language or Mobility A speech bubble comes out from the icon with some types of sensory conditions: Deaf, Blind, Hearing Impairments, Visual Impairments
An icon for Physical disability is a person moving forward in a wheelchair.   Words go around the frame to that describe areas of development that are implicated by physical disability, these are: Mobility, Physical Capacity, and Stamina. A speech bubble gives examples of some types of physical disabilities, which are Brain or Spinal Cord Injuries, Arthritis, or Amputation.
An icon for Chronic Illness is a person with pain lines emitting from their back. Words go around the frame to describe some impacts of chronic illness: Life long, Fatigue, Pain. A speech bubble comes out from the icon with some types of Chronic Illness: For example: Diabetes, fibromyalgia, inflammatory diseases.
An icon for Mental Health is a person sitting with their head in their hands. Words go around the frame to describe some impacts of mental health conditions: Regulating Emotion, Impulse Control, Regulating Cognition A speech bubble comes out from the icon with some types of mental health conditions: Depression, Anxiety, Substance Use Disorder, Schizophrenia

Disability and Diversity

Don’t stop by naming a condition of difference – there is more.

Disability is a very broad term including an incredibly diverse group of people. People with disabilities, even when they share the same condition of difference, do not form a uniform group and may or may not have anything in common with other people who experience disability. Just knowing a person’s disability type cannot determine how to support, interact or treat that person. The only way to do this is to get to know what is needed and the best ways to provide support. This should be a journey we go on together, each identifying expectations and roles. People can benefit from support, therapy and rehabilitation, but this also needs to go hand in hand with a focus on the environment. For full inclusion and participation in family, community and society, it is equally important to understand and be able to identify the barriers currently blocking access. 

  Part 2. Facing barriers to a balanced life

People living in a situation of disability often encounter barriers to participating equally and fully in any or all of the following:

  • family
  • community
  • society

Barriers often exist for two reasons:

  • Systems and policies were often developed by people who do not themselves have a condition of difference or know about conditions of differences.
  • Systems and policies were often created for users who predominantly do not have a condition of difference.

Because of this, the majority of creators and users are not aware of aspects of the system being inaccessible to people who have differences. These barriers are embedded in the physical design of our environments, or in the attitudes or beliefs held in today’s societies. 

  Examples from the Communities

Many people with disabilities encounter the same barriers to inclusion and like all people find strength in being accepted for who they are. This section summarizes the common barriers encountered, as well as the predominant themes of experiences that promoted success, from people with disabilities in the communities who participated in these projects.

Examples of facilitators that people from the communities shared as being supportive of their success, quality of life and inclusion.

Being included

The idea that each person had the right to have a place in the family and/or community despite disability status, was essential to supporting self-acceptance and motivation to thrive. This is a clear facilitator despite the complexity in the circumstances that people lived, each described a place where they were accepted. For some this included their family, for others, family and community, and for others, it could be a town or city outside of the community where they have found acceptance. When participants were grounded in belonging, they explained how they could progress.

Giving back
  1. Providing a place for participants to offer support in a variety of capacities, to be helpful and needed.
  2. Offering participants, a chance to work with and provide support to people with whom they identify.
Support services: Training and Rehabilitation

Promote progress and provide support in day to day life activities.

Examples of barriers that people from the communities shared as blocking their success, reducing their quality of life and reducing inclusion.

Disability must be visible: Social Stigma

Most participants told us of a common belief in the communities, that “genuine” disabilities were visible. Some of our participants believed this themselves. This belief created barriers for people who had invisible disabilities, such as mental health, learning disabilities, or some physical disabilities. Some of our participants with invisible disabilities described internalized stigma defined by feelings of blame or shame for the effects of their disability. Even in cases where they knew their disability could lead them to encounter significant barriers, they still felt their slower progress or poor outcomes were more the result of a character flaw than encountering a situation of handicap.

These participants frequently downplayed impairment effects including emotional or physical suffering, that they had experienced, although these effects were clearly significant. They also expressed feelings of isolation, because the way that they experienced many aspects of their life was not normal or common or at least was not presented as such in the community.

Ableism

Discrimination based on disability status, or “Ableism” was described by participants as a significant barrier to Inclusion. This phenomenon was present in varying degrees throughout all levels of social networks of participants. Sometimes this was experienced as teasing, harassment, or bullying within families or communities. Other times it could be described as a potential employer or band council openly questioning the worthiness or value of the FNPWD openly. These phenomena were more subtly experienced by people who would have their disability status questioned or perhaps would be mocked or teased about characteristics that are inherent to the disability condition. The amount that participants experienced ableism could be related to the severity of their condition, if they had a supportive social network, or if they were facing a host of other risk factors such as poverty, abuse and/or intergenerational trauma, specifically having parents who were in residential school or foster care. Ableism also resulted in a secondary theme which is fear of disclosure. Many participants described experiences of feeling fearful to disclose disability status to family, friends, peers, employers and even support or health professionals. Disclosure could result in anger, fear or judgement from others.

A third theme stemming from Ableism, was that of frustration and burden of having to educate others. This theme is woven into the fifth theme of disability, which is a lack of knowledge about disabilities. The experience of having to be an ambassador for disability and carrying the burden of explaining what disability is to others who do not know was always characterized as a negative experience. Participants who engaged in this type of behavior, explained it was necessary either to advocate for their own rights, or to demystify or counteract a faulty and potentially hurtful perception being expressed by others.  On the other end, some participants described hurtful or stigmatizing thoughts expressed by others, but instead of advocating for their position, they did not have the words, or energy, or self-esteem in that moment to speak, and in the worst-case scenario, internalized this negativity.

Many participants experienced being excluded from recreational community activities, employment and some family activities because of ableism. These types of experiences were defined by the belief of others that our participants could not participate due to disability status, and they did not need to be there. Many participants also described feelings of loneliness and isolation, usually in direct relation to this type of exclusion.

Violence

 

The broad theme, which was described throughout interviews as a significant barrier to people with disability is violence.

We found that violence was manifested in the following ways:

  • Physical: Intergenerational past, Family Past, Personal Past, and when in Foster Care.
  • Psychological: Some of our participants were the victim of Ableism or Racism. Themes of discrimination based on disability status and/or cultural status were present in all interviews from FNPWD.
  • Towards Others: Some of our participants were the perpetrators of violence (these situations were in conjunction with substance use)
  • Towards Self: Some of our participants had suicidal thoughts, attempted suicide or engaged in self-harming behaviors.

Video Learning Module

The following whiteboard learning module is a summary of all the key components of an integrated definition of disability.  Augmented by traditional knowledge and set in a contemporary indigenous context, this learning module provides a relevant framework from which to build understanding.

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Difference of Opinion

Emotionally Upsetting

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