Where can people with disabilities and their families turn for help? How should they start? The answer depends on what exactly each disabled person is looking for.
Near the start of every journey with disability, there’s a time when all the tests, treatments, and therapies end, and disabled people ask, essentially, “What’s next? Who’s going to help me now?”
Part of the problem is that “help” is probably too broad a word. It can mean too many things, especially to people with different disabilities and vastly different paths to life with a disability. That’s why it is so important for disabled people to think carefully about what exactly they are looking for — what “help” actually means to them.
Most disabled people are looking for some combination of several qualities:
Information:
This can include medical and practical information on their specific disabilities, basic knowledge of benefits, support services, and disability rights laws. And most disabled people aren’t just looking for more information, but better — as in accurate, up to date, and unbiased, or at least with clearly identifiable points of view disclosed upfront. In other words, disabled people want information they can trust.
Advice:
Disabled people often want and need something more than just lists of programs and their contact information. They crave a sense of direction, purpose, and endorsement from people who have some kind of credibility on disability matters. At the same time, most disabled people are wary of too much advice, especially when it’s too confidently or aggressively given. People with disabilities want advice and perspective, not condescending or unsolicited lectures, or demands.
Advocacy:
Disability can be lonely, especially when you have to argue or fight for what you need. Most people with disabilities at some point want more than anything else to find someone to join them in their struggles. But kindness and good intentions aren’t always enough. Disabled people want to find people and organizations that also have some kind of standing and influence that might make a difference in whether the answer to some disability-related need is going to be a “yes” or “no.” And eventually, most people with disabilities also want someone who will help them to learn their own advocacy skills, so they can grow in their ability to fight for themselves.
Material support:
Attitude, mindset, and even allies can only get you so far in dealing with disability-related barriers. For many disabled people the most urgent and difficult to satisfy priority is simply getting money to live safely and decently, when earning a living in traditional ways is impractical, reduced, or interrupted. They also often need specific kinds of tools and equipment that offer mobility and in other ways help disabled people live more independently and productively. And people with certain kinds of disabilities need one-on-one help from other people to complete everyday physical tasks and organizational needs. Independence is within reach for most if not all disabled people. But it often requires things that disabled people in particular find it difficult to afford without outside help and funding.
Camaraderie:
Most people want companionship on the journey through life. People with disabilities especially crave partnerships and friendships with people who can relate personally to the disability experience. Many also look for spaces and settings where disabled people can feel free to share their unvarnished feelings about living with disabilities. This kind of support is different from what professional service providers, advocates, and even most family members can provide. But it’s something people with disabilities are in a unique position to provide to each other.
When people with disabilities look for help, they are looking for some combination of these things, with different priorities depending on each person’s unique situation. And there’s another question on top of it all. What do disabled people expect help to look like, to feel like?
Do they expect a menu of available tools and strategies to choose and organize for themselves? Do they want to see all options presented without filter, ranking, or endorsement? Do they want to direct their own services and manage their own supports, even when that kind of independence becomes frustrating and time-consuming? Do they value choice and self-direction over simplicity and security?
Or, do they prefer and expect seamless, all-inclusive, professionally packaged solutions they don’t have to worry about? Are they looking for presorted and selected options with professional endorsements and guarantees? Do they want services and support that have a “turn-key” quality, requiring little to no self-management? Do they value low-maintenance, secure solutions over flexibility and self-direction?
There are people with disabilities in both camps, and most are somewhere in between. But though the answers might be complex, it’s critical for disabled people looking for help to think about how they want it provided, and how much they want and expect to either direct it or receive it.
So what should a disabled person look for when seeking help? Here are a few tips:
Don’t restrict your search to organizations focused on just your type of disability.
Disability is more than a medical experience focused on a particular diagnosis. Connecting with broader disability organizations can provide valuable perspective on issues and experiences people with all different kinds of physical and mental disabilities share. And pitching in with more general disability organizations helps build the power and solidarity of the disability community as a whole.
Look for local disability organizations that also engage regionally and nationally.
Look for a good balance between focusing on specific local disability issues, and wider understanding and involvement with disability issues everywhere. Seek out organizations that stay abreast of state, national, and even global disability issues — for locally run disability organizations that are also formally or informally connected with national or international disability organizations.
Look for disability organizations and services run and provided by disabled people themselves.
Disabled led organizations offer more real-life expertise, and are more likely to shape services and advocacy priorities in ways that serve disabled people themselves. Top-flight credentials, prestige, and the best intentions don’t always prevent disability organizations founded and run mainly by non-disabled people from losing their way and serving interests disabled people don’t really share. Look for organizations with disabled people at all levels — volunteer and paid — and including direct services, middle management, and leadership.
Be prepared to look for help more than once, and expect do a lot of followup.
One of the first things disabled people learn is that there is no central authority — no “one stop shop” — responsible for making their lives better. At best there is a loose network of organizations and government agencies with overlapping missions and jurisdictions that on a good day can meet some or most of a disabled person’s needs. But it almost always takes work to put it all together. And the work is never really done.
This fragmented, confusing system can seem like a massive systemic failure. And it’s certainly frustrating. On the other hand, it leaves more room for individual choice and self-direction. Standardized, packaged solutions can easily become stifling. And depending too much on one agency, service provider, or facility tends to increase the chance of neglect, abuse, or other kinds of failure.
So really, where should people start? What should a disabled person’s first call be when they are ready to start organizing a life with disabilities?
It’s hard to choose. But a logical choice might be the nearest Center for Independent Living. They generally meet most of the positive criteria discussed, including a combination of local, national, and global focus, and being governed and staffed primarily by people with disabilities.
Start by consulting this directory to find your local CIL. If they can’t help with immediate needs, they can be a good long-term ally, and provide good advice possible next steps.
Just remember that the first call won’t be anywhere near the last. And maybe that’s okay. It may even be preferable.
