Disability Awareness Month: What It Means for Families Living With ALS
September is Disability Awareness Month, a time to recognize the experiences of people living with disabilities and think about how we can make our communities more understanding, welcoming, and accessible.
For people living with ALS, disability can change almost every part of daily life. ALS gradually takes away a person’s ability to move, speak, eat, and breathe. But it does not take away who that person is. They still have thoughts, feelings, dreams, a sense of humor, and a desire to be included in the world around them.
My husband, Pete, lived with ALS for nearly 11 years. During that time, I saw how much strength it took for him to adjust as his abilities changed. I also learned that some of the hardest challenges were not caused by ALS itself. They came from buildings that were not wheelchair accessible, a lack of transportation, expensive medical equipment, necessary home modifications, and too little support for family caregivers.
Disability awareness is about more than knowing that disabilities exist. It means taking the time to understand what everyday life can look like for someone with a disability.
Can a person using a wheelchair enter the building? Is there an accessible restroom? Can someone who has difficulty speaking communicate in a way that works for them? Are caregivers included and supported? Can a family affected by ALS attend an event, enjoy a meal out, or take a vacation without facing one barrier after another?
These may seem like small things to some people, but they can make the difference between someone being included or being left out.
It is also important to remember that not every disability can be seen. Someone may look fine while dealing with weakness, exhaustion, breathing problems, or difficulty communicating. Sometimes the most helpful thing we can do is slow down, listen, and ask what the person needs instead of making assumptions.
At Let Hope Grow, Inc., we want people living with ALS and their families to know they are not alone. We help with medical equipment, home modifications, financial needs, and other resources that can make daily life safer and a little easier. We also support caregivers, encourage greater accessibility, and help fund research in the hope of finding better treatments and, one day, a cure.
This month, I encourage everyone to take one meaningful step. Learn more about ALS. Look around your workplace, business, church, or community event and ask whether it is truly accessible. Be patient with someone who communicates differently. Check in on a caregiver. Support organizations that work directly with people living with disabilities and their families.
Disability does not lessen a person’s value or their need for friendship, laughter, purpose, and joy. Every person deserves to be seen, heard, respected, and included.
At Let Hope Grow, we believe that even during life’s hardest moments,
hope can continue to grow.