How to be an ally to people with disabilities
While I have no family tie to anyone living with intellectual or developmental disabilities (I/DD), I have been advocating for people with I/DD for the last 23 years. For some, that makes me a “saint,” and they make statements that I must be a special person as they could never do what I do. Comments like those are actually offensive to me as I am no better than the next person, I just happen to love and value people of all abilities.
For others in the disability community, I am somewhat of an “outsider” as I have never walked the path of a parent to a disabled child. While that may be true, I have made a strong commitment to improving perceptions, correcting myths and stereotypes, and enhancing quality of life and opportunities for my friends living with I/DD as they deserve nothing less.
I did not plan my career; I accidentally fell into working with this population. The job provided good hours, pay and benefits and was partially related to my double bachelor’s degree in Psychology and Sociology. Not having any background in the field or in my personal life through school, family or friends meant I was on a HUGE learning curve. I made many mistakes early on (still do) but learned so much in the process.
I am confident I am where I am supposed to be and doing the work I was called to do.
While some days feel like three steps forward and two steps back, when I focus on creating greater opportunities and advancements for people with I/DD I am able to keep the setbacks in perspective. I was invited to write this blogpost to help others with no personal connection understand how they can also be an ally to people with disabilities.
Sit down, be quiet, and listen
While you may be able to empathize and genuinely want to understand life with a disability, only people living with a condition can completely comprehend that experience. Narratives for people with disabilities are primarily given through a caregiver lens, which can sometimes be disingenuous and problematic if the caregiver has low expectations.
One of the best gifts you can give is to sit down, be quiet, and listen to a person with a disability as they tell you about their life, hopes, dreams, and needs. Don’t anticipate problems or try to fix everything. Part of the human experience is struggling and taking risks. To deny these opportunities to people with disabilities out of love, or to protect them from their dreams, says a lot more about you than it does about them.
Stand up, speak out, and make noise
People with disabilities often feel invisible, overlooked, or marginalized. They advocate and fight for the same basic rights others take for granted on a daily basis. One of the most powerful ways to make change is for people outside the disability community to stand up, speak out, and make some noise.
Join coalitions, committees, boards, or organizations who involve those they claim to represent. Join lobbying efforts, sign petitions, visit your legislators, VOTE, go to the Capitol, and make sure injustices are brought to light. If you fail to speak up in the face of discrimination, then you are equally responsible for that oppression.
Presume competence always
Imagine living every minute of every day having to prove yourself capable.
It sounds ridiculous, but that is often the case for people with disabilities. If someone uses a wheelchair daily, they are probably quite capable of navigating doors and elevators without your assistance.
The polite thing to do is wait for a person with disability to indicate they would like your help and then to wait for them to tell you how they want to be helped. Most well-meaning people jump ahead of that and start assisting without asking, or they offer help in a condescending manner without intending to do that.
You can never go wrong by presuming someone is competent and then waiting for them to request your help.
Don’t be hell-bent on helping
Disabled people have every right to their own agenda and not one prescribed by family members, caregivers or community members. While additional support to complete tasks and learn new things may be helpful, we too often move directly to over helping people with disabilities.
The sad truth is that this can actually make them less able in the long run. Overzealous people who are hell-bent on helping are likely to either upset people with disabilities, or to create an environment of learned helplessness which can be life limiting.
Don’t feel sorry for or pity people with disabilities
People with disabilities are not interested in your pity.
They generally don’t feel sorry for themselves and will be offended if you make overtures on how hard their life must be, how inspiring they are, and how you could never live the way they do. Messages like these convey that you feel their lives are substandard and not any way to live at all. People do not suffer from their diagnosis but they do suffer from outdated myths, stereotypes and constant ableism surrounding them.
Dignity in risk
All people learn through trial and error, and our mistakes often turn into the best growing experiences as human beings. People with disabilities are often “not allowed” to date, have sex, get married, parent children, try something new or live independently. Some are never left unsupervised or given any privacy at all under the guise of “keeping them safe”.
Safe from what?
I’m not suggesting you should expose someone with a disability to a dangerous environment, but deciding ahead of time they can’t handle something they have never tried is very problematic.
There is dignity in risk, and everyone should have the chance to try new things, go new places, and enter relationships. Ensuring proper support is accessible is more helpful and life affirming than taking opportunities off the table entirely.
Ask questions respectfully
Staring, whispering, and making gestures towards someone who is different can be very offensive. If you have questions, it is better to ask your questions respectfully than to make someone feel judged. The person with a disability has every right to choose whether or not to answer your question. Some will. Some won’t. Think how you would feel if someone approached you and asked you questions about your life, health, diagnosis, challenges and you have never met them before?
Parents, family members, friends and guardians of disabled people may feel overwhelmed, frustrated, inadequate and angry at times.
Providing respite, a listening ear, accompanying them to appointments, visiting during hospital stays and “just being there” can make a world of difference.
Celebrating milestones and encouraging caregivers is helpful to envisioning a bright future. Reminding caregivers to promote independence and ask for help when needed is equally important. Be sure you are willing to follow up on support requests or seek out resources if you cannot help with the immediate needs.
Donate to quality organizations
Once you meet someone with a disability and get to know them, ask them what organizations have been helpful to them and why. Donate and get involved with these organizations as they are clearly great allies.
The golden rule says to do unto others as you would have them do unto you.
The Platinum rule is to treat others the way they want to be treated.
This is the easiest way to be an ally to people with disabilities. Providing thoughtful support when requested by a person with a disability and following their lead will go a long way towards reducing and perpetuating negative stereotypes while improving opportunities and outcomes for everyone!
When you open your heart and mind to people with disabilities you will find they have many gifts and talents and make some of the most awesome friends and teachers. I can’t imagine any other career path and I am so grateful for the amazing experiences I have had the last 23 years!
Now go out and be an ally!
Amy Allison is the Chief Operating OFficer at the Down Syndrome Guild of Greater Kansas City. She is a die hard chocolate lover, world traveler and devoted wife and mom to three pretty awesome kids. She also considers herself a surrogate mom to the 1,500 individuals with Down syndrome she serves daily through her work.