Thank you for including us in your story! Most likely you have a need for this toolkit Speak Easy: A Guide to Public Speaking because you or a loved one has a rare disease. As you prepare to use the tools in this kit, we want you to know that you are not alone. We are in this together. It is our hope that the personal stories, resources, tips, and suggestions for self-reflection in this guide will make the road to advocacy for your rare disease more manageable.
We know, all too well, that a lack of information and support for people living with RARE diseases can lead to feelings of dis-ease. Please know, it’s not just you—feeling depressed, anxious, and isolated are common conditions in the RARE community. Fortunately, RARE Advocates see these challenges as opportunities to take control back from their disease by filling the void with support, knowledge, and advocacy.
While we believe you will benefit from reading all of the material in this toolkit, we don’t want to overwhelm you. We’ve included a table of contents to make it convenient for you to find the information you are most interested in at this time.
Section 1: Speechless in Seattle: Crafting Your Story
Whether you are standing on a stage with a microphone or on a street corner with a megaphone, feeling confident about your public speaking skills is critical to your message. We will never know how many cavemen activists stood on soapstone boulders grunting about how to reinvent the wheel. But what we do know is the desire to share our mutual concerns, solutions, and needs in a public forum has evolved from boulders to blogs. And every hour, on cable news, there is a politician on a soapbox grunting about how to reinvent the big wheel of government
If you are ready to stand on a soapbox and be the squeaky wheel on RARE patients’ rights, healthcare legislation, pharmaceutical trials or other societal issues, then you are on the right train. Points of interest on your journey through this toolkit include: real-world knowledge from experienced RARE speakers; tips and tricks for speech crafting; interactive quizzes; presentation dos and don’ts; and other practical information to help you to be speech-ready in Seattle, or wherever you have an audience. Let’s get started!
Name that Speech
Unless you are giving a speech about speeches, the audience is not likely to give an owl’s hoot about the textbook name of your speech. But for you, the speaker, it is helpful to have a basic understanding of the primary types of speeches and examples of how they show up in the world.
Impromptu speeches are generally made with no preparation, because the speaker is unaware that he or she will be making a speech. Example: This is the speech you make—right now, when members of your RARE support group choose you to speak about healthcare legislation at the town hall meeting.
Extemporaneous speeches are prepared in advance but delivered without notes or text. Example: This is the “I need a pay raise” speech you wrote and rehearsed for months, only to blurt it out when the boss asks you for holiday party theme suggestions.
Manuscript speeches are pre-written. A manuscript speech is read to an audience exactly as it was written, word for word. Example: This is the pre-written profit and loss report delivered by the company accountant that explains why your chances of getting a pay raise this year are not so good.
Memorized speeches are recited from memory rather than being read from cue cards or from notes. Example: This is the memorized pitch recited by the cable sales rep who is trying to sell you lightning fast Internet service at a better price than the competition.
Speech Construction Zones
Now that you know what the primary types of speeches are, you may recall having given one or more of them in some form. Maybe it was a book report (manuscript), an unanticipated thank you speech (impromptu), or answering without notes (extemporaneous) anticipated job interview questions: “In five years I see myself with your job, a corner office and a fabulous parking space.” And with the exception of the impromptu speech, speaking engagements are generally scheduled; allowing you time to prepare your speech in advance.
The Write Stuff!
Types of speeches:
The informative speech This speech uses facts and information to educate the audience on a topic, and generally steers clear of personal opinions and hypothetical ideas.
The idea speech The opinions of the speaker are included in an idea speech. This kind of speech often involves an expert in a certain field who is qualified to voice an opinion.
The inspirational speech The inspirational speech is used to arouse the audience’s emotions. Personality, gestures, descriptive word choice and voice inflections are key to the inspirational speech.
Three major parts of a speech:
1. Opener is where you get the audience’s attention by telling them what the subject matter of your speech is. Tell them what you’re going to tell them.
2. Body is the largest part of a speech because it consists of the main content of the speech. Tell them.
3. Conclusion/close is the end of the speech. The conclusion reiterates what the speech is about. Tell them what you told them.
Consider these tips when preparing to write a speech:
Speech length: Experienced speakers caution that preparing a short speech of five minutes or less can be more difficult than preparing a longer speech. You have to make every word count with a short speech.
Time allotted: Know how much time you will have to deliver your speech; and then decide how much time you want to spend on each part of the speech. And unless, otherwise stated, factor Q&A time into your total allotted speaking time.
Objective: You may have more than one objective for your speech (e.g., to educate the audience about rare diseases and to get volunteers for your fundraiser). After you determine your primary objective use it to create an outline with the major talking points of your speech.
Content: Fill in your outline with content that supports your major talking points, and then add content that is less critical to your primary objective.
Forum: If you are part of a panel discussion or one of many speakers to address the same audience, prepare your speech to the forum’s guidelines.
Audience expectations: Include content in your speech that is on-topic and a reasonable match to the audience’s expectations.
Audience size: The same speech can be delivered to different size audiences. But the logistics of engaging with 15 heartbeats in a conference room is different than engaging with 200 people in an auditorium. If possible, find out in advance if there will be someone to usher a microphone to audience members
1. Use your experience to tell a good story (write what you know).
2. Use 40 percent of your speech to tell your story.
3. Use 40 percent of your speech to educate.
4. Use 10 percent of your speech for your “ask.” Ask the audience what you want from them as it relates to the objective of your speech.
5. Use 10 percent of your speech for your call-toaction. Tell the audience what next step you would like them to take as it relates to your objective.
6. Use your close to leave the audience feeling positive about your objective.
Measuring Up: Audience Size
Four highly esteemed speakers from the RARE community gave these answers to the question: Should a speech be tailored to the size of the audience?
“Definitely! Before you write a speech you should know about your audience, about the facility, about the logistics, because it makes your options smaller or larger. You would structure a talk for 15 people differently than you would structure it for 300.” – Melissa Hogan, President and Founder, Saving Case & Friends
“A speech should always be tailored to the size and to the composition of the audience. I always ask what the make-up of the audience will be, and then I tailor material to one professional grade beneath the lowest common denominator.” – Matthew Might, Ph.D., President and Founder, NGLY1 Foundation
“No, it matters how much time you have and if there are other speakers. If there are other speakers, you really need to know how much time you have. But it’s also important to know who the audience is.” – Robert Ostrea, President and Co-Founder, Little Miss Hannah Foundation
“No. If it’s a small group it might be a little more informal because of your proximity to the audience; but the content and the message should be the same.” – Monica Weldon, President and CEO, Bridge the Gap-SYNGAP Education and Research Foundation
Do the Write Thing!
Best-selling authors, iconic filmmakers, Grammy Award winning songwriters and you have a story to tell. And while you may not be seeking the Podium Award, you do want to give a speech that fulfills your objective. From the audience’s perspective, they likely left cozy sofas and 650 channels of cable TV to listen to you. So, do the right thing and give them your best effort! Listed are some of the standard practices experienced speakers suggest
• Practice, practice, practice! Record yourself and listen to the playback with a critical ear for common issues like speaking too fast, sounding robotic, lack of inflection, speaking too softly, mumbling, and similar, easy to correct, issues.
• Rehearse your speech in front of someone else to get an honest critique of your delivery skills, body language, and speech content.
• Find the balance of purpose and personal story.
• Have a clear and defined objective.
• Really know your talking points.
• Perfect your timing.
• Open with an icebreaker: quote, joke, scripture or short analogy. BUT make sure the icebreaker is appropriate for the audience in front of you. Opening or closing your speech with a prayer may be acceptable for a religious/spiritual audience, but not a non-secular group.
• Mark places in the speech to take natural pauses.
• Prepare in advance for broadcast media opportunities. Ask someone to role-play one-on-one interviewer scenarios with you.
• Remember to include an “ask” and/or call to action. Tell the audience, as it relates to your objective, what you want them to do next. Your ask may be to: donate money, follow you on social media, sign a petition, or to do the hokey pokey—“put your left foot in…”
• Know who (patients, doctors, advocates, etc.) the primary audience will be, and then prepare a speech that is appropriate for that audience.
• Aim to leave the audience with a “happy ending” or a best-case scenario that is realistic to the objective of your speech.
• Do not include political opinions, social injustice issues, racial/cultural prejudice, or religious practices in your speech, unless these hot button topics are the purpose of the event. Including these topics in a speech can create an emotional barrier between you and some audience members.
• Avoid “Why my family?” “Why my neighborhood?” and similar statements. Unfortunately, difficult circumstances in some form (illness, crime, accidents, etc.) happen to most people over the course of a lifetime.
• Unless you have materials for the audience to refer to during your speech or you’re doing a workshop, do not give handouts, brochures, or other items to the audience until you finish speaking. Ideally, you want the audience listening to you, not reading your handout.
• Audience engagement has many benefits, but it also has some common pitfalls. And as sure as God made little green apples you will encounter audience members who ask off-topic questions or who become quarrelsome. Don’t let these sour apples highjack the purpose of your speech or your allotted speaking time. Forewarned is forearmed; practice how to tactfully redirect or diffuse these situations when they occur.
• Do not imitate other iconic speakers. Connect with the audience by being your authentic self and not an imitation of someone else.
“It’s almost always a bad idea to include personal, political, opinions in a speech. However, one should never shy away from advocating for specific policies in a nonpartisan manner on the individual merits of a policy. Rare disease strikes everyone across the political spectrum, so rare disease unites everyone.” – Matt Might, P h.D., President and Founder , NGLY1 Foundation
Smoke and Mirrors: Podium Magic
Hollywood is rewarded with huge, very huge, box office cash and applause for the movie magic it creates with smoke and mirrors. Meanwhile, over the rainbow in Kansas, there is a roster of advocate speakers who are receiving well-deserved applause (cash, not-somuch) for the podium magic they create.
Here’s a behind the curtain look at some of the body language and speech delivery tips and tricks the pros use:
Have a well-written and well-practiced speech.
Do what’s necessary to feel confident about your appearance. Avoid using jargon, slang, profanity, and regionalisms. You don’t want something important to get lost in translation.
Control distracting speaking habits like: throat clearing, nervous laughter, and using repetitive phrases such as, “You know.” “So, like.” “Uhmm.”
Control physical distractions. You don’t have to stand like a Buckingham Palace guard, but try to minimize blinking, fidgeting, shuffling notes, excessive gesturing or pacing, and don’t turn away from the microphone while speaking.
Make deliberate eye contact with the audience. Look at and hold your gaze for 10 to 30 seconds on one person, and then look at someone else (wash, rinse, repeat). This technique helps you to connect with the audience and to determine if the audience is connecting with you.
“People don’t want to hear complaining. People want a champion who, regardless of any obstacles, is going to find a way around it, over it, or through it. That’s the positive message I like to leave them with.” – Monica Weldon, President and CEO, Bridge the Gap-SYNGAP Educati o n and Research Foundation.
Mirror Mirror: Perceptions Matter
Human nature is such that people often make assumptions about each other, based solely on appearance.
The psychology behind this behavior is for bigger brains to noodle over in academic journals. In the context of this toolkit the topic of appearance relates primarily to an audience’s perception of you as a credible source of information. But equally as important, is how you perceive yourself.
A lack of confidence in your appearance is a distraction you don’t need when you’re looking out at a sea of expectant faces.
Listed are tips for raising your confidence and credibility level:
1. Know the event (standard business attire works in most scenarios, but why suffer in a suit, if your country club audience is dressed for a golf tournament).
2. Dress for the person and the place.
3. Keep a jacket or blazer in the car to quickly make casual slacks or a skirt look more polished.
4. Take a hard look at the person in the mirror. Ask yourself, based solely on appearance, what assumptions would you make about the person looking back at you? (If your assumptions are unfavorable, do what you can to correct the issues.)
5. Save time and money by having a “business uniform” that you can wear to most speaking engagements. Ask family members for a candid assessment of how you look in your uniform; depending on their responses, adjust accordingly.
6. Dress appropriately, but comfortably. Otherwise, the audience may assume the look of discomfort in your face is with the words you’re speaking, not with the new shoes you’re wearing.
You are Here: Speaking Opportunities
The “X” on the mall’s “You are Here” map makes it easier for you to navigate from where you are, the Piggly Wiggly Superstore, to where you want to go, the Cinnamon Buns for Giants bakery. Just as helpful, but with fewer calories, are these insights for navigating your way through the many media vehicles available for getting your message in front of an audience.
Press release: a statement prepared and distributed to the press by an individual, organization, public relations firm, governmental agency, etc.
The benefits of media exposure (even the bad can be good--sometimes) are numerous and worth pursuing. If you’re like most speakers, you likely have more passion about your cause than you have money to promote it—enter media coverage. Unless you hire a publicist, most forms of media coverage are free. Thanks to satellite television, the Internet, and smartphone technology, people around the globe can watch the interview you did with the Buzzy Bee Gazette on Monday. And by Friday, with enough clicks and shares, you could be your cause’s most recognized spokesperson.
Print and broadcast media coverage is responsible for bringing awareness to many speakers and their causes for decades. If you are just starting out it can be worth the effort to introduce yourself to local media outlets with a press release or by contacting their media relations departments.
Call radio talk shows and share your opinion and your objective on topics that are about or adjacent to your cause. Every bit of exposure helps and can eventually lead to media reps calling you. And when they do you’ll want to be prepared to respond. Working with the media before your interview:
• Know the purpose and history of the outlet.
• Know what their intended editorial angle is. You don’t want to be caught off guard by unfavorable commentary or negatively biased questioning.
• Get background on the reporter, media outlet, and why they want to cover you or your event.
• Send them your personal and professional bio before the interview or event.
• Share with the interviewer your primary goal for agreeing to do the interview.
• Ask interviewers to notify you in advance about when your story is scheduled to be on TV, radio, or online. If the content will be online, ask if their website has a paywall.
• Ask magazines, newspapers and other print publications about getting an advance copy and additional copies of the issue you’ll be in.
• Submit pictures that support your objective.
• Promote who, what, why, and where of your upcoming media coverage online and offline. Example: “Hey guys, WYKP news interviewed me about the butterfly garden fundraiser. Please watch it on their noon news tomorrow.”
• Confirm their permission to republish on your website, social media platforms, YouTube and other formats, materials related to their coverage of you or your event.
Paywall is a monetized system in which access to all or part of the content on a website is restricted to paid subscribers.
King of the World: New Media
In the not so distant past when people still slept in pajamas, print publications were royalty. Local newspapers and magazines were the most popular ways to reach an audience that wasn’t seated at your kitchen table. Well, the digital age has ushered in a new media king. A king that is partly responsible for the decline of the print publishing industry. Yet, there is good news! History bears out that losses due to innovation are generally followed by gains, which is definitely the case with new media.
Which means opportunities to be interviewed by an intern reporter at the Buzzy Bee Gazette are still possible. The void left by many print operations stopping their presses is now being filled by a variety of exciting digital formats that include:
Online print editions:
local newspapers/magazines offer their print versions on the Internet and in limited print editions.
a program (music or talk) made available in digital format for automatic download over the Internet.
YouTube news: offers high quality, informative, and entertaining news from around the world; news creators can reach a global audience anytime, anywhere, on any device.
a regular feature appearing as part of an online publication that typically relates to a particular topic and consists of articles and personal commentary by one or more authors.
Vlog: a blog that contains video content. Webcast: a transmission of sound and images (as of an event) via the World Wide Web. Webinar: a seminar conducted over the Internet
Best Guest: TV Studio Interviews
You’ll win an Emmy Award for best guest when you use this insider info to make your TV interview smooth sailing. You may be familiar with the news anchors and reporters at your local TV stations, but not with the many other people who work behind the scenes. When you are on the set of the studio, in addition to the host, the other person you will likely interact with is the studio’s floor manager. One of the floor manager’s many responsibilities is using hand signals to relay time cues from the director to the host.
These time cues are used to count the host down to commercial breaks and to the end of the show—that’s a wrap! As an interviewee being familiar with these time cues allows you to respond accordingly to how much time is left for you to finish a thought or to answer a question; and in some cases to keep speaking.
The hand signals for studio time cues are:
1. Hand in a “C” shape means, “30 seconds left to wrap.”
2. Closed fist means, “15 seconds left to wrap.”
3. Raised index finger making a lasso motion means, “That’s a wrap.”
Two other important and commonly used hand signals are:
4. Index finger slashing motion across the neck means, “cut.”
5. Both hands pulling outward across the chest means, “stretch/ continue talking.
• Avoid, especially from the waist up, wearing stripes for on-camera appearances. Stripes and similar types of patterns can cause distracting, on-camera, visual effects.
• Don’t wear all black. Whether or not a studio camera adds the appearance of 10 pounds to a person’s physique is debatable. If you desire the slimming effect of black opt instead for neutral tones like gray, lilac or pale blue; they are better than black with its limited contrast.
• Don’t wear all white. White can “bloom” under bright studio lights, making it visually overwhelming for viewers.
• Don’t wear shiny jewelry or dangly bracelets, necklaces, or earrings that make noise when you move.
• Don’t freeze up. Breathe and act as if you are talking with friends.
• Follow the lead of the host, but remember what you are there to share.
• Let the show’s producer know in advance if someone will be accompanying you on the set and if you will be using props or other visuals on-camera.
• Be prepared to introduce the host to people who accompany you on the set. In your introduction briefly explain the person’s relevance to your story.
Shared Spotlight: Conferences/Panels/Webinars
Opportunities for sharing the stage and the spotlight with other speakers are on the rise. With few exceptions, there are conferences, panels, and webinars available online and offline for most any topic that Google can deliver search results. According to the U.S. Bureau of Labor Statistics, conventions and events are expected to expand by 44 percent by 2020, far beyond the average projected growth of other industries.
For the inexperienced speaker sharing the spotlight with others on a panel is a way to get comfortable with being on stage. A webinar also offers safety in numbers. Generally, you will share your information alongside other presenters, often to a faceless audience of online attendees. Use these group forums to sharpen your delivery skills and to learn from other more experienced speakers. Pay attention to how they respond to questions asked by moderators and audience members.
Conferences and conventions can offer opportunities to deliver your speech to adjacent audiences of your objective. A conference on healthcare may include speakers on a range of topics from government legislation to home medical devices. They also offer breakout sessions that allow speakers to engage with attendees in smaller groups
Elevator Pitch: Going Up!
While Pluto has some of the characteristics of a planet, much to the dismay of Plutonians, the International Astronomical Union has decided it is not a planet. Similarly, an elevator pitch has some of the characteristics and purpose of a speech, but technically it isn’t a speech.
What an elevator pitch is: As the name suggests, the objective of an elevator pitch is to cover the critical aspects of an idea, product, or service in the time it takes to ride an elevator (about 30 to 60 seconds). Of course if you’re going to the top of the Empire State Building you may get another minute or so to complete your pitch.
Where and when to use an elevator pitch: The brevity and conciseness of an elevator pitch makes it easy to deliver most anywhere. In an elevator, on a train, on a plane, in car, or in a bar--go for it! An elevator pitch is often delivered in response to a query such as: “How many Monarch butterfly gardens will be planted with the money you raise?” Without a query you may have to create an opening, demonstrated in this wiggly scenario, to deliver your elevator pitch: You’re in the Piggly Wiggly Superstore parking lot when you see the always chipper, Chamber of Commerce president, Mary Kaye. You need contacts from her that are critical to your butterfly garden fundraising efforts, so you seize the moment, “Hi Mary Kaye, great job with the Chamber’s luncheon Saturday. We didn’t get a chance to chat, but I just started a fundraiser to plant butterfly gardens to stop the rapid decline of Monarch butterflies. I’ll bet you didn’t know that our local flowers might not be pollinated this spring if there are not enough Monarchs. Can you refer me to 10 local groups that may be willing to donate money for Monarch butterfly gardens?”
If Mary Kaye gives you the expected chipper reply she’s popular for, you have the green light to extend your pitch. But be mindful not to make her feel as if she is an audience of one watching a bad infomercial. Ideally, you should try to engage the person in a two-way conversation about your topic. Elevator pitch components and template:
Using the Monarch butterfly garden scenario here are the key components and template of an elevator pitch.
1. Conflict: Explain the conflict/situation. (The Monarch butterfly population is declining.)
2. Impact: Explain the impact of the conflict/situation. (How the declining Monarch butterfly population affects pollination of local flowers.)
3. Resolution: Explain how the conflict/situation can be solved. Focus on benefits, not products and services. (If 10 local groups donate money; then butterfly gardens can be planted before next spring.)
Tools of the Trade
Microphones types and uses:
• A ball-style microphone can be wireless or corded. Public speakers, interviewers, performers, and entertainers often use wireless microphones because it allows them to move about freely while speaking.
• A lavaliere microphone is a small microphone used for television, theatre, and public speaking applications. Small clips are used to attach the microphone to collars, ties, or lapels in order to allow for hands-free operation.
• A microphone straight stand has a dome-shaped metal base or a tripod base, into which a post is threaded for mounting a ball-style microphone. The post is usually made up of a clutch and two or more telescoping tubes that fit inside each other to allow the height of the stand to be adjusted.
• A teleprompter prompts the person speaking with an electronic visual text of a speech or script displayed on a screen.
• The screen is in front of, and usually below, the lens of a professional video camera, and the words on the screen are reflected to the eyes of the presenter. • A teleprompter is similar to using cue cards.
• Teleprompters are helpful to newscasters and speakers delivering manuscript-style speeches.
• Because the speaker is looking forward instead of down to read from a manuscript, using a teleprompter gives the appearance that the speaker is delivering a memorized speech or an impromptu speech.
• PowerPoint presentations are effective for showing visual images that support what you’re saying. If you are speaking about grief, include images that add emotion to your words. Bulleted lists that focus on key parts of your speech are also appropriate, but putting your entire speech up is a no-no.
• Photographs and short videos that support or highlight your objective or that show outcomes to content covered in your speech can be useful. (You raised enough money to open a pediatric clinic, including a photo or video of the clinic makes a strong visual impression.)
• Props and similar show and tell items can be entertaining or they can be distractions. Use your best judgment about including props in your presentation.
Drop the Microphone: Speaker’s Delight Not Fright
Experts estimate that 75 percent of the population has some level of anxiety related to the fear of public speaking (glossophobia). If you get nervous before going on stage take comfort that you are in famous company. Singers Donny Osmond, Barbra Streisand, and Beyonce’, all admit to having issues with stage fright. And also like these superstars, you have what it takes to “make yourself big” and share your purpose on the world stage. After your first speech drop the mic (maybe not literally), take a bow and enjoy the well-deserved applause!
Welcome to Something Bigger!
You are a part of something bigger—THE RARE COMMUNITY! Building connections within your specific disease community is absolutely the most vital part of your efforts. Members will tell you that the depth of the connection they feel with others in their rare disease community is hard to describe. There is an innate sense of closeness and empathy that comes with a rare disease diagnosis. Like we said in the beginning you are not alone. You are part of an estimated 30 million Americans and 350 million people worldwide that are affected by a rare disease. While the diseases and the symptoms may be different, people in the rare community often share the same challenges and fight for the same changes. This is a powerful thing! Rare is everywhere and is frankly not-so-rare.
"It’s not in the stars to hold our destiny, but in ourselves." - - William Shakespeare