CHANGE THE GOOD, THE BAD AND THE INEVITABLE
BY PATTI WADE
Right at the beginning, I want to assert that the following is an opinion piece, my opinion. I have worked in the field of Intellectual and Developmental Disabilities (IDD) for a bit over 25 years. I have seen a lot of change, some welcome and some not. I suspect I will see a good bit more.
One of the first things that comes to my mind when I think of change, is TECHNOLOGY. Technology is always changing, and it seems to be changing at a faster than ever pace. Technology can be a God-send or a nightmare when it comes to being a person with IDD or trying to help support someone. There are countless options today for devices that can help a person be more independent, which is certainly a good thing. However, learning to use them can be frustrating and make a person feel even more helpless and in need of assistance.
By all accounts, I do not have an intellectual disability, nor am I experiencing cognitive impairment or memory loss (yet). Still, I struggle to even marginally keep up with all of the technological changes whizzing by me. If you are the same, find a tech-savvy friend and don't be ashamed to ask for help. Several of my friends with IDD are better at modern day tech than I, especially those who have grown up with it. They delight in being able to teach me, and I try to return the favor in other areas. These are changes that are here to stay, like it or not, so we should all embrace them and help each other out. This is an area where younger family members and staff often excel, and they can be an untapped resource when you're considering a new device or want to learn about what's out there. Let them shine and welcome the future.
Along with the changes in technology there are also SOCIETAL CHANGES. Social change comes about, often due to changes in our cultural beliefs and values. This may be the culture of the country or of an agency. No longer do we, as a society, believe that it is acceptable to shuttle disabled people to institutions or keep them apart from the general community. They are increasingly gaining acceptance as valued members of the community and finally being seen as people with the same hopes, dreams and rights as all people should have. That said, well meaning people often advocate that all people with IDD be "out in the community", whether they want to be or not. I think what most people want are options and not to have change forced upon them. New ways do not always have to replace the old, but rather should offer another option for people to choose from. Sometimes, change is good but too fast, and people adapt at different rates. The change should be up to the person who will most be affected. Yes, they should have the option of working. Yes, they should be able to live anywhere in the community they like. Yes, they have rights, just like the rest of us, but that should include the right to decline an opportunity, or at least wait until they are the ones who decide to make the change. COVID-19 has brought a screeching halt to the rush to get everyone out into the community. After all the push to be out there, we are now charged with teaching Social Distancing and enforcing stay- home mandates. Some have enjoyed the slower pace, some hate missing work, others are just confused, and their staff and families do not have an answer for when this will this end. I just want to urge all the decision-makers to remember, when this is finally over, some people will be able to immediately return to their previous lives and schedules, but many others will need time to readjust. The pandemic gave us no time in the begining, with everyone struggling to make the needed changes. Let's do a better job on the other end of allowing a gradual change back to "normal," or whatever the new normal will be.
Finally, there are the changes as we AGE. People who have IDD are not exempt from the changes we all face moving from childhood to adulthood, and eventually into old age. People with IDD used to be thought of as perpetual children, and treated accordingly. That is starting to change, and rightfully so. We need to not just care for people, but help them learn to care for themselves, as much as possible. "As much as possible" is a different benchmark for every person, but each individual can achieve some level of independence if we and they believe they can. Over the 25+ years that I have been working in the field, I have seen countless individuals achieve much more than anyone thought they could. I have learned to change my attitude about what is possible, but I also have learned to temper some aspirations with a touch of reality and not expect too much, too soon. Let each person develop at their own rate and celebrate them as they are. Keep in mind that they will slow down as they grow old. We all will. Some will age sooner than others. Some will develop Alzheimer's or other forms of dementia. Some will stay alert and clear headed until the end. Most will have the ailments of old age, some won't be able to tell you, so we need to watch for the signs of arthritis or decreasing vision and hearing. We need to allow them to slow down when they are ready, not when someone else decides it is appropriate. Watch and listen and you will see the changes and know when they are telling you it is time. Always be the positive change you want to see in the world. •
ABOUT THE AUTHOR:
Patti Wade is the Director of the Orange Grove Center on Aging, Dementia and Longevity. She has devoted her professional pursuits in supporting people with intellectual and developmental disabilities. She has a particular interest in Alzheimer's disease and creative methods to teach caregivers how to support those individuals in "their world."