Quality of Life As It Relates to Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter Q post in the #AtoZChallenge. Today, I want to talk about quality of life. This is a concept often used in medical ethics to determine whether someone’s life is “meaningful”, in this sense, “meaningful” enough for life-saving treatments. For instance, when I was a baby and sustained a brain bleed, my parents wondered whether I would later have sufficient quality of life for life support to make sense.

People with intellectual and other disabilities are, in this respect, often seen as having a lower quality of life regardless of their subjective experience compared to people without disabilities. After all, many people with intellectual disabilities cannot work, live independently or have long-term romantic relationships. That is, not in the same ways that non-disabled people can.

However, if we judge people’s quality of life by their earnings, their ability to live independently without any supports, and non-disabled people’s ideas of what constitutes a “normal” long-term romantic relationship, we are discriminating against rather than affirming people with disabilities.

Another way of employing the concept of quality of life is to look at what exactly brings meaning to each individual’s life, rather than to measure how meaningful each life is by how well-accomplished an individual is. This way, quality of life is useful even for people with profound intellectual and multiple disabilities. The Dutch Center for Consultation and Expertise has created a questionnaire on quality of life, which should be used as a stepping stone for first determining a person’s quality of life and then ways in which it can be improved.

For people with profound intellectual and multiple disabilities, quality of life really is often determined by tiny things. I mean, even for them self-determination and independence might be underlying values, but these are reflected in very small things. For example, I read about a discussion on the quality of life questionnaire between a family member and staff of a profoundly and multiply disabled person. The topic concerned his daily walks. One of the people involved said the client probably preferred to be taken on walks at least twice a day, while the other said he seemed not to like his walks at all. The difference turned out to lie in the way the people approached the walks: the person with whom the client didn’t seem to want to walk, pushed the wheelchair at a rapid pace without stopping, while the other walked slowly and took frequent breaks to show the client his surroundings. This shows how quality of life may be as simple as a slower walking pace.

Justice: Issues Facing People With Intellectual Disabilities in the Criminal Justice System #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m once again really late writing my #AtoZChallenge post and actually considered not writing it today, but that felt rather off. For my letter J post, I am writing about issues facing intellectually disabled people in the criminal justice system, be it as victims, witnesses, suspects, defendants or incarcerated individuals.

There are many issues for these individuals. For instance, people with an intellectual disability are far more likely to be victims of crime than the general population. For violent crimes, they are twice as likely to be victimized, whereas for other crimes, the ratio is even higher. For instance, people with an intellectual disability are easily exploited.

That being said, crimes against people with intellectual disabilities are not prosecuted as often as crimes against non-disabled people. The reason may be that intellectually disabled people aren’t viewed as credible witnesses.

When people with an intellectual disability are themselves suspects, they often do not get appropriate supports and reasonable accommodations to allow them a fair trial. In the UK, people with an intellectual disability can access an “appropriate adult”, who isn’t their lawyer but whose job it is to make sure their disability is accounted for during involvement with the justice system. This as far as I know does not (yet) exist in the Netherlands or the United States.

Many individuals particularly with a mild intellectual disability end up in regular correctional facilities because either their intellectual disability wasn’t recognized during trial or they don’t qualify for an insanity defense. Unfortunately though, the regular prison system can’t really accommodate these individuals. One of the student staff here used to work in correctional facilities and this motivated her to retrain as a support worker.

In the United States, people with an intellectual disability are exempt from the death penalty. However, it varies by state how it is determined whether a person actually has an intellectual disability. In some states, the jury decides on this, whereas in others, it’s the judge. Either way, I feel this is discriminatory, as neither a lay jury nor a judge are trained to recognize intellectual disability. Now I oppose the death penalty anyway, but I feel this lack of proper identification could affect individuals not at risk of execution too.