I have been trying to write this post for about a month now. Since July is National Disability Pride Month (who knew?https://en.wikipedia.org/wiki/Disability_Pride_Month), I have been thinking about how my disability affects my daily life, how certain accommodations might help me, and how I AM proud of what I can still accomplish (although differently than I used to).
I wrote about the passage of the American's with Disabilities Act in a post on July 26, 2022. If you'd like to read it, here's the link: (https://cheryltondreau.wixsite.com/blog/post/july-26-ada) In this post, I talked about what is in the Act and how it helps bring equity to those who are disabled in the following areas: Employment (Title I), State and Local Government programs (Title II), Public Transit (Title III), Businesses that are open to the public, Telecommunications (Title IV), Miscellaneous (Title V)
Significant changes to the definition of "Disability" were made to the Act in 2008 by including "major life activities". As described on the website, ADA.gov
A person with a disability is someone who:
has a physical or mental impairment that substantially limits one or more major life activities,
has a history or record of such an impairment (such as cancer that is in remission), or
is perceived by others as having such an impairment (such as a person who has scars from a severe burn).
The term “substantially limits” is interpreted broadly and is not meant to be a demanding standard. But not every condition will meet this standard. An example of a condition that is not substantially limiting is a mild allergy to pollen.
Major life activities are the kind of activities that you do every day, including your body’s own internal processes. There are many major life activities in addition to the examples listed here. Some examples include:
Actions like eating, sleeping, speaking, and breathing
Movements like walking, standing, lifting, and bending
Cognitive functions like thinking and concentrating
Sensory functions like seeing and hearing
Tasks like working, reading, learning, and communicating
The operation of major bodily functions like circulation, reproduction, and individual organs
How my disabilities affect my daily life
This month I've been thinking about how my physical challenges (neurofatigue, hemiparesis, Central Pain syndrome - allydonia) and neurological challenges (aphasia, apraxia of speech and dysarthria) affect every day activities.
neurofatigue - pace cognitive activities, rest when needed, limit social activities
hemiparesis (weakness on right side) - limit handwriting and typing; adjust ways I do activities such as cooking, baking and doing chores
central pain syndrome - using hand massage, pain cream, use techniques for allydonia
(getting pain from a stimulus that does not normally provoke pain)
aphasia (language disorder) - trouble reading (use ebook and audiobook at the same time to increase understanding); trouble writing (take time to organize thoughts, write notes, use thesaurus, spell check, etc. ) trouble understanding - quick directions given, conversations, shows and books with time travel, etc., trouble speaking (ask for patience, ask for mutual understanding, quiet environment with only one thing happening, etc)
apraxia of speech and dysarthria (communication disorders affecting motor speech and causing mistakes in pronunciation) - conversations (I tend to limit conversations to people who are supportive of me.)
other neurological challenges (intolerance with lights and sounds) - I bring acoustical earbuds everywhere to deal with loud noise at restaurants, when my husband and I watch TV or movies, etc. I haven’t been to a movie in theaters after the stroke but it is one of my goals for this year. Bright lights in stores (supermarkets and box stores like Target and Walmart) really affect me especially cognitively. I avoid the cosmetics section at Target and avoid Publix which is especially bright. I heard that Walmart has reduced lights and sounds at various times during the week, but I went during these times and didn’t notice a difference.
How certain accomodations could help me
As you tell from the above, over the years, I developed some good strategies and techniques for helping me with everyday activities that are important to me. When I think about how the ADA does or could help me, I think about how difficult it can be to communicate with others in public.
I'm reminded of the times I’ve tried to get something done on the phone and have been frustrated.
I am reminded of the time I contacted customer service at a supermarket I frequent to complain about being rushed at the fish counter and was told that “I should shop when there are not many customers”.
I remember the time I went back to work part time. Even though I had a supportive director, I could have used more specific supports.
And I think about how I couldn’t communicate at all with hospital staff and my family at the very beginning of my aphasia journey.
So now how could the ADA regulations help…https://www.ada.gov/resources/effective-communication/
The ADA requires that title II entities (State and local governments) and title III entities (businesses and nonprofit organizations that serve the public) communicate effectively with people who have communication disabilities. The goal is to ensure that communication with people with these disabilities is equally effective as communication with people without disabilities.
This publication is designed to help title II and title III entities (“covered entities”) understand how the rules for effective communication, including rules that went into effect on March 15, 2011, apply to them.
The purpose of the effective communication rules is to ensure that the person with a vision, hearing, or speech disability can communicate with, receive information from, and convey information to, the covered entity.
Covered entities must provide auxiliary aids and services when needed to communicate effectively with people who have communication disabilities.
The key to communicating effectively is to consider the nature, length, complexity, and context of the communication and the person’s normal method(s) of communication.
The rules apply to communicating with the person who is receiving the covered entity’s goods or services as well as with that person’s parent, spouse, or companion in appropriate circumstances.
Communication supports -
at the hospital, I could have been given more support. The SLP had told my sister that they would provide a picture sheet which would help me communicate with staff. This sheet was never given. I wanted desperately to communicate my needs for additional comfort (adjusting pillows, need for pain medication, and turning off TV) and my desire for hygiene (brushing teeth or washing my face which was never done in the hospital)
How I am proud
When I first heard about National Disability Pride Month, I said "pride"? how can I be proud of my disability.? It just is. Fact of life. I think I took it the wrong way. Of course I think we all should be proud of the amazing, unique individual that we are.
Then I thought, maybe some people need to be reminded of that. Having a "Pride" month or day could possibly highlight our uniqueness. And being part of a group that has similar challenges, issues, beliefs, etc can be empowering. I have found my "tribe" with people who also have aphasia.
Just this morning, I finish a draft of a letter of support for a university that is asking for funding for a tool that assesses people with aphasia better. I participated in their initial research study last year. As I finished this one page letter which I have been preparing to write for a week, I thought “some people who read the finished project might think "how can a person with aphasia, a hidden disability, do this?" Granted I am able to write better than I can speak. I've talked about this so much on this blog....People might question the validity of my disability. People can't see how much I struggle with this. And frankly, if they are not going to support me, it's none of their business. I know how much I have to do in order to do these types of things. How many supports I have to use. (spell check, thesaurus, notes, organizing ahead of time, asking for help.....)
I'm reminded of having accessible parking spaces. Anyone who had a sticker or placqard is able to park in these restricted spaces. Some people I've heard complain when they see what they consider "abled body" people getting out of the vehicle. It's not up to us to judge. We can never truly know what someone is going through simply by looking at them. Same goes for people who have aphasia. Just my soap box for today.
Until next time....
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