Response to: "A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority."
I just wanted to add a few other dimensions to the topic on the happiness of persons who are living with a disability in which they have a limited ability to communicate: resources.
I work with participants at a cerebral palsy center. The persons I find to be more content are those who are given access to equipment that allows them to communicate with others and equipment in which their mobility is less restricted.
The people who use our program either have the luxury of private insurance in which they can have excellent augmentative communication devices, have state insurance that allows lower-end devices that take over two years to replace or fix when they break down, or no insurance and either use crappy equipment we have left over or none at all.
The same is true for the types of mobility equipment that participants have. Those with resources have better autonomy due to their wheelchairs' capabilities. Unfortunately for some, the use of any type of wheelchair only happens at our center.
Our computer lab is stocked with mid-range devices and substandard computers for this day in age. We do our best, but continued budget cuts have left this area wanting as well. There are a few participants whose augmentative devices access the internet, thus serving as their own computer as well, but this is rare.
I just thought I'd tell you that the study should include the subject of resources that allow people with severe disability to still be included in society would surely make a difference in how content their lives are.
It is a terrible shock to most who become disabled later in life to see how little value society puts on their inclusion when it comes down to it! I know because I have had two children born with disability, one in the state that your article is written about. Also, I majored in Disability Studies at UC Berkeley after raising my children. I now am a special educator working with adults who are living with a variety of disabilities.
Thank you for time
Conflict of Interest: