"There are plenty of experts but only a few are heard"

Aleksander Knauerhase is a freelance adult education instructor and lecturer. His presentations and seminars primarily focus on the subjects of autism and inclusion. What makes his lectures so special is his inside view of autism. After all, Knauerhase knows exactly what he is talking about: he is an expert with first-hand knowledge.

REHACARE.com asked him why people with disabilities are best suited to provide information about their own needs and interests and how our society can also benefit from this in the long run.

Mr. Knauerhase, why is it important for you as a person with autism to teach others about autism?

Aleksander Knauerhase: A lot of available information about autism often only focuses on things people have observed and interpreted from the outside. Unfortunately, the inside view, meaning how people with autism experience and perceive the things around them is far too often being neglected. This is especially true in the areas of training and studies. It is crucial to include an inside view in these instances. Having said that, this is only possible if there are also corresponding choices available. It is my goal to provide these options.

What role do your lectures and your book play in this?

Knauerhase: I can reach many people with my lectures, information sessions, and round table talks. They are important to draw people’s attention to my concern and to make a difference. My book fills a gap between people who read my blog and prefer to be online and those who come to my events. Having said that, my book conveys far more in-depth knowledge compared to my lectures or time-limited events. As I always like to say, "There is so much more I want to say …"

What makes you a first-hand expert in the field of autism?

Knauerhase: I have lived with autism for 42 years. Who better than me to know my own needs and worries? After all, you can only identify and try to overcome barriers if you experience them first-hand. It’s often not enough to just watch from the outside, especially when it comes to "invisible" disabilities that you cannot see or at least not notice at first glance. In this case, it is key to ask those people who are actually affected by the disability. What’s more - and we should always keep this in mind - we, too have the right to self-determination. If others decide about us but without us, it’s called heteronomy, which is something nobody wants.

Do you think there are already many first-hand experts that are actually also being heard?

Knauerhase: No, there are still far too few of them. There are plenty of experts out there but only a few are heard. Slowly but surely, the subject of empowerment is gaining wider recognition. Having said that, there is a lot that still needs to happen in this area for people with disabilities to actually be allowed to speak on their own behalf and advocate for their own interests and concerns. The more invisible a disability is, the harder it is to have your say.                                                            

Why do you think that is?

Knauerhase: For one thing, society almost automatically doesn’t view people with disabilities as full-fledged human beings. That’s because the deficits are so apparent, causing others to overlook the actual human being behind the disability. People don’t think persons with disabilities can do a lot of things. This is especially the case when it comes to psychological and mental impairments and people with learning disabilities. We are often told that we are incapable of making important decisions. That’s just absurd! I believe more people with disabilities would become involved as experts with first-hand knowledge of disability if they thought they could actually change things and make a difference. This is where we need role models and structures that allow for this to happen. It’s a process that needs to develop and grow. These are exciting times!

How can our society as a whole benefit from recognizing and taking people with various disabilities seriously as experts with first-hand knowledge in regards to their needs and interests?

Knauerhase: Instead of answering this question, let me ask you this instead: what would society lose if it did those things? Nothing. Yet the benefits are obvious: people with disabilities would have considerably more support that is meaningful and desired. And this, in turn, would first make participation easier and, in the long run, also promote inclusion. But above all, it would teach society about disabilities, gradually remove the stigma of disability and most notably help in overcoming any reservations. Deficits would take a back seat while the focus turns to the person.